Wednesday, 29 June 2016

STRATEGIES TO PROTECT VULNERABLE LITIGANTS - PERSONS WITH DISABILITIES


By
Wamundila Waliuya
(Executive President)
Disability Rights Watch)

A Paper Presented at the Workshop on Removing legal barriers to treatment: Legal training on health and human rights Held from 27th to 29th June, 2016 in Johannesburg, South Africa, convened by the Southern Africa Litigation Centre (SALC)
1.    INTRODUCTION
Persons with disabilities have been facing challenges in seeking the protection of their rights and fundamental freedoms through strategic litigation. These challenges are several. The challenges range from personal perceptions persons with disabilities have as vulnerable people; unaffordable legal fees; fear of the justice system and so on.

This paper attempts to address matters around the protection of persons with disabilities in the process of their quest to litigate. The paper will address the rights persons with disabilities hold; the challenges they face both in health and litigation, and provide recommendations to resolve such matters. The paper is a contribution to the panel discussion whose objective is to equip participants with strategies to ensure that the interests, dignity and safety of vulnerable clients with disabilities are protected in litigations.

2.    CHALLENGES PERSONS WITH DISABILITIES FACE IN ACCESSING HEALTH SERVICES INCLUDING HIV SERVICES
Persons with disabilities face challenges in accessing health services, including HIV services on an equal basis with other people without disabilities. Some of the challenges include the following:
a.    Absence of confidentiality especially for persons who are deaf. The fact that persons who are deaf require sign language interpreters compromises the needed confidentiality, especially when accessing VCT services. Confidentiality is also limited for persons who are blind and can not independently get to the HIV centres or read any documentation on their own.
b.    Inaccessible infrastructure: some of the buildings providing HIV services are not physically accessible making it difficult for persons with disabilities, especially those with physical disabilities to access services.
c.    Negative perception: in some sections of society, persons with disabilities are viewed as people who are not sexually active. This keeps them away from the HIV centres in fear of stigma and discrimination.
d.    Inadequate accessible IEC materials: persons with disabilities have got little access to HIV IEC materials. This is especially so for those who are blind and need to use Braille.
e.    Long distance: persons with disabilities find it difficult to access health facilities due to long distance from their homes, especially in rural areas. In towns, they may be limited by funds and the discomfort of inaccessible public transport.
f.     Persons with multiple, intellectual and mental disabilities find it difficult to make informed consent in VCT. This is so because of the difficulty they have in communicating in ways that will be easily understood by the service providers. Some of the service providers may deny those services. In extreme circumstances they may be exposed to forced or involuntary testing and treatment.
3.    THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES
a.    Background
This section of the paper will focus on the United Nations Convention on the Rights of Persons with Disabilities. This is the Convention upon which DPOs are basing their strategic advocacy. In all common law countries, the UNCRPD must be used as a tool for persuasion or legal reform.
The United Nations Convention on the Rights of Persons with Disabilities was adopted by the UN General Assembly in December, 2006. It was adopted at the same time with its Optional Protocol. The Convention came into force on 3rd May, 2008. According to paragraph (y) of the preamble of the UNCRPD States Parties adopted the Convention after being “cconvinced that a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities will make a significant contribution to redressing the profound social disadvantage of persons with disabilities and promote their participation in the civil, political, economic, social and cultural spheres with equal opportunities…”. If we need to deliberately address the matter of protection on persons with disabilities in litigation, then we need to deliberately uphold this condition.
The purpose of the Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. The adoption of the Conventions confirms the position of many disability rights activists that disability is perfectly a human rights issue. It therefore affects all development issues.

It should be noted here, by the legal practitioners anew all other judicial officials, that the UNCRPD does not in any way represent a new set of human rights for persons with disabilities. It adopts the same human rights outlined in the UN Declaration of Human Rights, and as affirmed by the two International Covenants on Human Rights. What the UNCRPD does is simply to focus on the same rights using a disability magnifier. Equal access to quality legal representation is one of the key human rights issues the Convention focuses on.

The UNCRPD carries “heavy human rights implications” on the lives of persons with disabilities and their families. Before we dwell on the provisions of the Convention, it is essential to understand the medical and social model of perceiving disability. The medical model of perceiving disability focuses on the impairment a person has as being the cause of the difficulties a person with the impairments faces in their life. It looks at the impairment as being the problem that needs to be ‘fixed’ or ‘repaired’ or maybe ‘corrected’ in order for the person having the impairment to function in a manner desirable to the rest of society. So, the medical model blames the person and the impairment they have as being responsible for all their limitations in life. The model is shaped in such a way that it calls for the changing of the person with the impairment so that they fit in society.
On the other hand, the social model focuses on the environment as having barriers that hinder the person with impairment from participating effectively in the affairs of the society. The social model looks at society as having attitudinal and environmental barriers that limit the effective involvement and participation of persons with impairments in economic, social, cultural, political and civil affairs of their society. So, the social model apparently blames the society as being responsible for the inadequacies in the effective inclusion of persons with impairments. The model seems to say, “Change the society by removing all the barriers so that persons with impairments would participate on an equal basis with other citizens of the world”.
In simple terms, the medical model targets to fix the person with impairment while the social model targets to fix the barriers in the society. This is the model upon which the principles of the UNCRPD are premised. This is the same model upon which efforts to remove legal barriers in accessing quality health on an equal basis with other people should be premised.

It is obvious now that the UNCRPD focuses on addressing the barriers and obstacles persons with disabilities face in their day-to-day life as they attempt to enjoy and exercise their economic, social, cultural, political and civil rights, including the rights to equal access to quality health through the use of litigation. Arguably, this means that focus should be on breaking the legal barriers and obstacles that hinder persons with disabilities to litigate for the purpose of accessing quality health on an equal basis with other people.

This brings us to the point of understanding the term ‘disability’. Although the UNCRPD does not explicitly define ‘disability’, it views ‘disability’ as resulting from the interaction of impairments with various barriers which hinders full and active participation in society on an equal basis with the non-disabled majority. This tends to place the Convention within the context of the social model which is rights-based. So, all efforts and strategies to protect litigants with disabilities should be based on the social model which is right-based.

Furthermore, what the UNCRPD brings with it is the spirit of equality, non-discrimination, dignity and independent living. These addresses the discrimination persons with disabilities have been suffering without any protection from a binding international human rights law. The Convention seeks to promote and protect the rights of persons with disabilities and further promotes the respect for their inherent dignity.

b.    Relevant provisions of the UNCRPD
As already observed above, the UNCRPD does not explicitly define the term “disability”. However, in its preamble, the Convention recognises “disability” as “an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”. In view of this, the UNCRPD states that “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”.
This on its own signifies the importance of viewing persons with impairments as being disabled by the barriers they meet as they interact with the environment. These barriers include attitudinal, environmental and institutional barriers.
For the purpose of this paper which is on breaking legal barriers faced by persons with disabilities when litigating, it is important to look at some of the definitions provided by the Convention. Language and communication are some of the major barriers persons with disabilities face.
The UNCRPD says that "Communication" includes languages, display of text, Braille, tactile communication, large print, accessible multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes, means and formats of communication, including accessible information and communication technology. It further says that "Language" includes spoken and signed languages and other forms of non spoken languages. In the effort to break legal barriers, the above perceptions of communication and language should be adopted. The failure to allow the use of the above modes of communication and language are a form of discrimination on the basis of disability.
In many instances, persons with disabilities are classed under the umbrella of “vulnerable people”. This is correct only when it is related to discrimination. The UNCRPD states that "Discrimination on the basis of disability" means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. The Convention says discrimination on the basis of disability includes denial of reasonable accommodation. It further says that "Reasonable accommodation" means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.
The justice system should get rid of discrimination on the basis of disability. This is the largest barrier hindering persons with disabilities seeking justice in the health sector through litigation. Provision of reasonable accommodation. In protecting persons with disabilities from discrimination on the basis of their disabilities, the UNCRPD provides some general principles upon which any measures to be taken should be based.
Article 3 of the Convention provides the general principles. These general principles are respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; non-discrimination; full and effective participation and inclusion in society; respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; equality of opportunity; accessibility; equality between men and women; respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.
It is clear that the above principles provide a basis for effective protection of persons with disabilities when seeking justice in the health sector through litigation. The principles provide a ground for which legal practitioners can break the legal barriers throughout the litigation process. The principles also provide a base upon which they can frame their arguments in the efforts to address barriers in the health care system.
Equality and non-discrimination is a key principle which should always be carried by every practitioner in the quest to protect persons with disabilities who choose litigation as a tool to redress discrimination in the health care system. Article 5 of the UNCRPD provides for equality and non-discrimination. Article 5 (1) states that “States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law”. Legal practitioners should ensure they uphold this provision.
Paragraph 2 of Article 5 of the UNCRPD states that “States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds:. This provision strengthens the legal protection of persons with disabilities and it equally needs to be upheld by the legal practitioners.
The UNCRPD further says that “in order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided”. Remember, reasonable accommodation is defined above. In this instance, reasonable accommodation includes the provision of sign language for those who are deaf; Braille materials for those who are blind; easy to understand language for those with intellectual disabilities; support persons to enhance supported decision making for those who have mental disabilities; large print for persons with visual impairments; language interpreters for those who can not speak English or any official language being used. The institutions delivering justice should at all times be physically accessible to allow all categories of persons with disabilities, especially those with physical disabilities move independently for the purpose of respecting their dignity.

The UNCRPD recognises girls and women with disabilities as a more vulnerable group in its Article 6. It says that States Parties recognise that women and girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms. This is essential for legal practitioners. While viewing persons with disabilities as being vulnerable due to discrimination, it is essential to note that girls and women are particularly facing multiple discrimination on the basis of their gender and low economic status. Furthermore, girls and women with multiple, intellectual and mental disabilities face more discrimination than other girls and women on the basis of the nature of their impairments. It therefore needs specific measures to address their protection.
The other more vulnerable group is children with disabilities. The UNCRPD emphasizes the recognition of children with disabilities in Article 7. Apart from stating that in all actions concerning children with disabilities, the best interests of the child shall be a primary consideration, Article 7 (2) states that “States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right”.
This requires that in all matters affecting children with disabilities who wish or whose representative wishes to take the route of litigation, the best interest of that child should be of primary consideration. Furthermore, the interests of the child with a disabilities should be based on what the child has expressed. The impairment of the child should not be in any way being a ground not to litigate or participate in the litigation process. Age and disability appropriate measures should be taken to reasonably accommodate that child with a disability. Such measures include the respect and protection of the dignity of that specific child at the time of litigation and in the future of the child. Professional support persons or probation officers should always be available to provide age and disability related assistance and protection to the child with a disability. Specialised assistance and protection should be provided for children with deafblindness, intellectual, mental and developmental disabilities. It is recommended not to have such child related cases heard in public throughout the legal process at all levels.
The principle of accessibility is another important principle in protecting persons with disabilities in litigation processes. Article 9 of the UNCRPD outlines provisions on accessibility. Paragraph 1 of the Convection demands that “To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public…”. The key phrase here is “in all aspects of life”. This includes the field of justice delivery. Of course justice delivery includes equal access to legal representation. Truly, access to justice includes access to the physical environment, transport and communication.

Article 9, paragraph 2 (b )requires that State Parties take appropriate measures to “ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities”. Provision of accessibility here then affects the private law firms that are to represent persons with disabilities. Accessibility should begin from the chambers of law firms. If the chambers of the law firms are not accessible in terms of physical environment, communication, language and transport, they create a huge barrier for persons with disabilities to equally access justice in their quest to access quality health care on an equal basis with other people.
Article 12 of the UNCRPD is one of the most interesting but challenging item of the UNCRPD. Article 12 is on equal recognition of persons with disabilities as persons before the law. The UNCRPD recognises persons with disabilities as persons everywhere before the law. The Convention also holds the reality that persons with disabilities have got the right to enjoy their right to legal capacity on an equal basis with others in all aspects of life. The Convention further states that “State Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity”. The Article requires State Parties to ensure that safeguards are provided to avoid abuse. It further says that “such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person...and apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body”.
This provision of the Convention is essential in the quest to protect persons with disabilities who choose the litigation route in championing their right to quality health care services on an equal basis with others. Although it covers all persons with disabilities, it touches more on persons with mental and intellectual disabilities who are legally declared as ‘incompetent’ or ‘of unsound mind’. In the spirit of substantive equality, the UNCRPD upholds equal access to justice for all categories of persons with disabilities while taking into considerations their different disability related circumstances.
The right to legal capacity includes access to support one may require in exercising their legal capacity. This may be in circumstances where the decision making capability of a person with a disability is restricted, but it should not in any way be interpreted as a test for legal capacity. Mental capacity is not related to legal capacity! Legal capacity is an inherent right. Rationally, persons with disabilities should access the support they may require in exercising their legal capacity in the process of litigation.
In simple terms, legal capacity refers to the right of a person with disability to make their own decision and be able to exercise those decisions. Legal capacity means the right of persons with disabilities to self-determination in life. It means persons with disabilities’ ability to control their lives. Legal capacity includes the right to supported decision making in self-determination and making own choices. It includes the right to own property and manage one’s financial affairs.

The rights to legal capacity are an essential aspect of the legal system and legal practitioners should carry out further reading on this subject. If not well understood, it may negatively affect the rights of persons with disabilities in their quest to seek legal protection. This is so, especially for persons with intellectual and mental disabilities.
In the process of protecting persons with disabilities in the litigation process, the issue of equal access to justice arises. The protection of persons with disabilities in litigation includes the necessity to uphold equal access to justice. Equal access to justice begins from the time the persons with disabilities raise a complaint of human rights violation or any matter, either civil or criminal, to the relevant authority in the justice system. The issue of legal capacity also applies at this early stage. Article 13 of the UNCRPD is on access to justice. Paragraph 1 of the Article states that “States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages”. This is interesting!
The first thing to observe is that “appropriate accommodations” should be provided. This arises from the principle of reasonable accommodation. It also touches on the principle of legal capacity in terms of supported decision making for adults with disabilities and age appropriate assistance for children with disabilities. Secondly, it covers for the “investigative and other preliminary stages” which touches on all levels of the justice system. The legal practitioners should take note of these two aspects of equal access to justice by persons with disabilities. It affects the families, communities, police and other law enforcement institutions, judiciary, law firms and quartz human rights institutions including Human Rights Commissions and the Office of the Public Protector where they exist.
Looking at the way the issue of access to justice affects different institutions at different levels, there is an obvious need to equip personnel working within the justice system on the human rights issues of persons with disabilities. Without training, it will be difficult to effectively protect persons with disabilities involved in strategic litigation. The UNCRPD demands that personnel in the justice system should be trained. Article 13 (2) requires that “In order to help to ensure effective access to justice for persons with disabilities, States Parties shall promote appropriate training for those working in the field of administration of justice, including police and prison staff”. This includes lawyers, Judges, Magistrates, judicial clerks and health practitioners providing medical information as expert witnesses. The training and awareness raising should be spread across all levels including students of law and health practice. In many instances persons with disabilities, especially those with mental disabilities are always detained in police stations of prisons while seeking justice, but especially when they are suspects of criminal offences. In many instances they have been detained or imprisoned while waiting for medical or psychiatry assessment. Some have been improved for more than 30 years without trial. Such imprisonment has been on the basis on their disability, the disability being mental disability.
Article 14 provides for the liberty and protection of the security of a person. The Article states that “States Parties shall ensure that persons with disabilities, on an equal basis with others: enjoy the right to liberty and security of person; are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty”. This means the existence of a mental disability shall not justify the deprivation of liberty. This is crucial in the process of protecting of persons with disabilities in the litigation process. In other words, no individual with a disability, including mental disability should be deprived of their liberty on the basis of their disability during the litigation process. In this discussion, it includes offenders with mental disabilities! But the UNCRPD is further progressive on this matter.
Paragraph (2) of Article 14 states that “States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of this Convention, including by provision of reasonable accommodation. This is the more reason that this paper emphasised Article 3 and Article 12 of the UNCRPD. In addition the aspect of reasonable accommodation has been stressed.
It is within the hands of legal practitioners to provide reasonable accommodation. It is within the powers of the legal representatives to demand for the protection of liberty and protection of person; legal capacity and respect for inherent dignity for all persons with disabilities. Positive reflection should be done in terms of protecting the rights of persons with intellectual ad mental disabilities.
Article 21 (a) requires that State Parties ensure that persons with disabilities receive information on an equal basis with other people by “accepting and facilitating the use of sign languages, Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication of their choice by persons with disabilities in official interactions…”. This Article is in support of Article 9 of the UNCRPD which covers accessibility.
During the process of protecting persons with disabilities who are litigating, the protection of their privacy is essential. This applies to all persons with disabilities especially those who are blind, deaf or have intellectual and mental disabilities. Article 22 (1) says that No person with disabilities, regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy, family, home or correspondence or other types of communication or to unlawful attacks on his or her honor and reputation. The Article further says that persons with disabilities have the right to the protection of the law against such interference or attacks. Legal practitioners should ensure that the privacy of litigants with disabilities is protected throughout the litigation process.

Paragraph 2 of Article 22 further says that “States Parties shall protect the privacy of personal, health and rehabilitation information of persons with disabilities on an equal basis with others”. It is important to ensure all health information of persons with disabilities is protected.
Article 25 is specifically on health. The Article says that States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. The Article also states that the State shall provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health.
Article 25 requires health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care.
The UNCRPD is very progressive in as far as promoting and protecting the rights of persons with disabilities seeking equal access to health care through litigation. It is the responsibility of the legal practitioners to ensure that that the provisions of the Convention are interpreted in such a way that all forms of discrimination are eliminated in the process of litigating.
4.    PROTECTING THE RIGHTS OF LITIGANTS WITH DISABILITIES
a.    Risks Persons with Disabilities May Face
As can be observed in the discussion above persons with disabilities face certain risks directly linked to their disabilities. Such risks include the following:
i)             Compromise of their privacy and confidentiality during the litigation process due the communication and language barriers especially for those who are blind, deaf and those with intellectual disabilities.
ii)            Loss of dignity due to inaccessible infrastructure where persons with physical disabilities are lifted up the stairs.
iii)           Denial of the right to informed consent when it comes to decision making in the litigation process due to mental and intellectual disability.
iv)           Compromise of the anonymity of children with disabilities thus creating fear in the child with a disability and their parents.
v)            Withdrawal of the court case by persons with disabilities due to pressures coming as a result of the length of court cases; poor or expensive transport and inaccessibility to the courts.
vi)           Withdrawal of cases by persons with disabilities due to high legal fees.
b.    Measures to Protect Persons with Disabilities in Litigation – the Case of Zambia
In Zambia, there is a law titled “Persons with Disabilities Act of 2012). This Act protects the rights of persons with disabilities and it domesticates the UNCRPD. The Persons with Disabilities Act affirms the provisions of the UNCRPD Article 12 by providing in its paragraph 8 (1) that “A person with disability shall enjoy legal capacity on an equal basis with others in all aspects of life”. Interestingly, this paragraph mirrors the provision of UNCRPD Article 12. The protection of the rights of persons with disabilities to participate in the process of litigation without any form of discrimination is guaranteed in this paragraph. Informed consent both in litigation and in accessing health services is guaranteed here, including for those persons with mental and intellectual disabilities.
It should be noted that legal capacity includes supported decision making. It also includes advance directives for persons with mental disabilities. Advance directive means, giving instructions on how a person with a mental disability should be treated by the justice institutions when they are in a crisis. This instruction may be formal or informal to a next of kin, a close friend or any attorney.
The Persons with Disabilities Act directly seeks protection of persons with disabilities in litigation by addressing the judiciary. Paragraph 8 (2) states that “The Judicature shall take necessary measures to ensure that persons with disabilities have equal and effective protection and equal benefit of the law without discrimination”. This calls for the State to ensure that the justice system is fully accessible and promoting and protecting the principle of respect for inherent dignity, non-discrimination and independent living. This is a huge challenge to legal practice and the judicial officials.
Paragraph 8 (3) of the Persons with Disabilities Act places the burden of ensuring equal access to justice on the judiciary. This is one of the progressive provisions of the Persons with Disabilities Act when it comes to the protection of all categories of persons with disabilities to participate on an equal basis in the justice system. The Act states that “Where a person with disability is a party in any legal proceedings, the adjudicating body shall take into account the condition of the person with disability and provide procedural and other appropriate facilities to enable the person with disability to access justice and participate effectively in the proceedings”.
The Persons with Disabilities Act ensure the protection of the interests, will, preference and dignity of persons with disabilities in litigation. It protects the right of persons with disabilities to reasonable accommodation. Legal practitioners in Zambia should ensure that this part of the Act is enforced at all times when any person with a disability is litigating. It is essential to develop jurisprudence around this provision so that other common law countries may utilize the judgment.
In the Zambian courts a judgment was passed concerning liberty and access to justice for persons with mental disabilities detained while waiting for trial or psychiatry assessment. In the case of Situmbeko Anaenyi and others Vs. the Attorney General of Zambia, in which the five persons who remained detained in Chainama East Hospital petitioned the State in April, 2014, seeks the following reliefs:
a)    a declaration that their indefinite detention without trial was a violation of their rights to a fair hearing within reasonable time as provided under Articles 18 (1) of the constitution of Zambia.
b)   Declaration that their indefinite detention without trial constituted a violation of their right to liberty as enshrined in Article 11 and 13 (30 of the constitution of Zambia.
c)    A order that they be released then.

The Judge held that there was no evidence suggesting that the failure of any of the petitioners to appear before the court and take plea was on account of their own default. Even if they were found to be of unsound mind by reason of schizophrenia after being examined by psychiatrists and remained in the same state of mind since then, the law, as it was set out in the Mbaye case, required that they be sent back to court….
Consequently, the Judge held that the continued detention of all the petitioners at Chainama East Prison was illegal on account that they were not afforded a fair hearing within reasonable time as was guaranteed by Article 18 (1) of the constitution.
In view of the above the Judge ordered that Anaenyi Situmbeko, Yona Lungu, Emmanuel Mwape, Stephen Phiri and John Bwembya be released forthwith. The Judge found out that their detention taking into consideration their schizophrenic condition was unreasonable.
This was a landmark Judgment that stands to promote and protect the rights of persons with disabilities, especially those with mental disabilities, to equal access to justice. Their schizophrenic condition did not in any way require that they be detained for long periods of time without trial. The longest detention was for 35 years.
5.    CONCLUSION AND RECOMMENDATIONS
a.    Conclusion
It is obvious that persons with disabilities face a lot of challenges when taking their cases to court. Such challenges either stop persons with disabilities from litigation or withdraw their cases from court. The challenges are several. Most of the challenges are addressed by the UNCRPD. The case of the Persons with Disabilities Act of Zambia sets an example of how law should protect the rights of litigants with disabilities. It is very important for other jurisdiction to emulate the case of Zambia. Strategic advocacy is required from Disabled People’s Organisations whose governments have ratified the Convention to ensure the enactment of disability laws that domesticate it.

It is very important that legal practitioners take pro-active steps to ensure the protection of persons with disabilities in litigation. Persons with disabilities should also be encouraged and strengthened to use strategic litigation as a tool for advocacy to ensure the promotion and protection of their rights and fundamental freedoms.
b.    Recommendations
In order to ensure that the interests, dignity and safety of persons with disabilities in litigation are protected the following recommendations are provided. These recommendations should be treated as strategies to enhance the protection of persons with disabilities in litigation.
i)             Persons with disabilities should be allowed to communicate in languages or communication modes of their own choices and such languages or communication modes should include sign language and Braille.
ii)            Persons with disabilities who require the support in exercising their legal capacity should be provided with that support by the State or they choose the support they require and if possible, provide their own support which should be accepted by the justice system throughout the litigation process. The support includes supported decision making, sign language interpretation, and human readers for blind persons, Braille and simplified language for those who require it.
iii)           The will and preference of persons with disabilities should always be recognised at all times in the process of litigation by persons with disabilities. The principle of “the best interest of…” should be replaced by the principle of “the best interpretation of the will and preference of…” which strongly reflects exercise of legal capacity. It also promotes the principle of free and informed consent in both the litigation process and health services decision making. Legal practitioners should never allow substituted decision making in both litigation processes and access to health processes.
iv)           All institutions in the delivery of justice should ensure that all their premises are physically accessible to all categories of persons with disabilities. Accessibility audits of such premises can be carried out by trained personnel from the DPOs with the provision of recommendations for relevant adjustments.
v)            Institutions in the delivery of justice should ensure that the right of children with disabilities to express themselves in the litigation process is upheld. This right should be accompanied with the provision of age and disability appropriate assistance. Where the dignity and future social standing of the child with a disability is compromised, anonymity of the child should be upheld. The child should not be exposed to the public through public hearings and media coverage.
vi)           Legal practitioners representing persons with disabilities should always ensure that the respect for inherent dignity, autonomy and independence of persons with disabilities is upheld throughout the litigation process. This calls for the upholding of the other General Principles outlined in Article 3 of the UNCRPD throughout the litigation process.
vii)          Legal practitioners should always ensure that the issue of legal capacity, which includes supported decision making and recognition of the will and preference of the person with a disability, covers the aspect of free and informed consent in the whole litigation process. The aspect of free and informed consent should be upheld in decisions in the litigation process and decisions in consenting to any medical and health services including reproductive and HIV services.
viii)         Legal practitioners should at all times of the litigation process protect the rights of persons with disabilities to mental and physical integrity. As already indicated in the text of this paper, violation of the right to mental and physical integrity comes in many forms which legal practitioners should continuously guard against. This includes the avoidance of lifting persons using wheelchairs up the stairs into the chambers of both the law firms and courts.
ix)           Legal practitioners should observe at all times the multiplicity of discrimination faced by girls and women with disabilities. This occurs even in circumstances where girls and women with disabilities are seeking respect for the realisation of their rights through litigation. Violation occurs on men, including men with disabilities. Therefore, legal practitioners should always mix the gender and disability vulnerability when it comes to women with disabilities.
x)            Legal practitioners should take deliberatye4 measures to learn and uphold the rights of those persons with disabilities who require intensive support. Such persons with disabilities may include persons with intellectual and mental disabilities.
The general recommendation is that legal practitioners from the common law countries should endeavour to develop jurisprudence around the right to equal access to medical and health services for persons with disabilities. Jurisprudence on the equal access to medical and health services for persons with disabilities will:
a.            Develop case law upon which legal practitioners will base their argument for redress on the matter of equal access to quality medical care and health for persons with disabilities.
b.            Strengthen and build the capacity of persons with disabilities and their representative organisations to demand for the protection of the rights of persons with disabilities in seeking judicial redress on discrimination cases in the health sector.
c.            Create awareness among both the general public and persons with disabilities on the inherent rights for persons with disabilities to seek quality health services on an equal basis with other citizens and that the violation of such rights can be appropriately be redressed through litigation.
d.            Establish case law to amend all other laws that limit, restrict or impede the exercise of persons with disabilities to equal and effective participation in the whole justice system including litigation by persons with disabilities and their representative organisations.
e.            Awareness raising is key. This will demand for awareness development and education of the judicial workers and other justice syste4m workers on matters affecting persons with disabilities in accessing equal access to justice with the upholding of equality; respect to inherent dignity, including informed consent; non-discrimination; independent living and accessibility.
Further Resources
1.    The United Nations Convention on the Rights of Persons with Disabilities
2.    General Comment on Article 12 (2014) of the United Nations Committee on the Rights do Persons with Disabilities.
3.    The Persons with Disabilities Act of 2012, Zambia.

4.    Visit: www.disabilityrightswatch.net.

Thursday, 23 June 2016

DISABILITY AND HIV

By Wamundila Waliuya

A Presentation made at the Third Meeting of the Africa Regional Judges’ Forum on HIV, Human Rights & the Law held in Johannesburg, South Africa from 15 to 17 Jun. 2016

1.      INTRODUCTION
The rights of persons with disabilities are generally protected after a lot of strategic advocacy by the Disabled People’s Organisations (DPOs). This paper will give an overview of how the rights of persons with disabilities in Zambia have been protected. The overview will indicate the importance of the protection of the rights of persons with disabilities. A brief discussion will also be made on the Sela Brotherton and Electoral Commission of Zambia (ECZ) case and how the judgment from this case impacts on persons with disabilities. In addition, the paper will discuss the United Nations Convention on the Rights of persons with Disabilities.

2.      THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES (UNCRPD)
a.       Overview
The United Nations Convention on the Rights of Persons with Disabilities was adopted by the UN General Assembly in December, 2006. It was adopted at the same time with its Optional Protocol. The Convention came into force on 3rd May, 2008. The adoption of the Conventions confirms the position of many disability rights activists that disability is perfectly a human rights issue. It therefore affects all development issues.

It should be noted here that the UNCRPD does not in any way represent a new set of human rights for persons with disabilities. It adopts the same human rights outlined in the UN Declaration of Human Rights, and as affirmed by the two International Covenants on Human Rights. What the UNCRPD does is simply to focus on the same rights using a disability magnifier. Equal access to quality health is one of the key human rights issues the Convention focuses on.

The UNCRPD carries “heavy human rights implications” on the lives of persons with disabilities and their families. Before we dwell on the provisions of the Convention, it is essential to understand the medical and social model of perceiving disability. The medical model of perceiving disability focuses on the impairment a person has as being the cause of the difficulties a person with the impairments faces in their life. It looks at the impairment as being the problem that needs to be ‘fixed’ or ‘repaired’ or maybe ‘corrected’ in order for the person having the impairment to function in a manner desirable to the rest of society. So, the medical model blames the person and the impairment they have as being responsible for all their limitations in life. The model is shaped in such a way that it calls for the changing of the person with the impairment so that they fit in society.

On the other hand, the social model focuses on the environment as having barriers that hinder the person with impairment from participating effectively in the affairs of the society. The social model looks at society as having attitudinal and environmental barriers that limit the effective involvement and participation of persons with impairments in economic, social, cultural, political and civil affairs of their society. So, the social model apparently blames the society as being responsible for the inadequacies in the effective inclusion of persons with impairments. The model seems to say, “Change the society by removing all the barriers so that persons with impairments would participate on an equal basis with other citizens of the world”.

In simple terms, the medical model targets to fix the person with impairment while the social model targets to fix the barriers in the society. These are the models upon which the principles of the UNCRPD are premised. These are the same models upon which equal access to quality health and HIV services for persons with disabilities should be premised.

It is obvious now that the UNCRPD focuses on addressing the barriers and obstacles persons with disabilities face in their day-to-day life as they attempt to enjoy and exercise their economic, social, cultural, political and civil rights, including the rights to equal access to quality health and HIV services. Arguably, this means that focus should be on breaking the barriers and obstacles that hinder persons with disabilities from enjoying equal access to quality health and HIV services.

This brings us to the point of understanding the term ‘disability’. Although the UNCRPD does not explicitly define ‘disability’, it views ‘disability’ as resulting from the interaction of impairments with various barriers which hinders full and active participation in society on an equal basis with the non-disabled majority. This tends to place the Convention within the context of the social model which is rights based. So, all efforts that will be made towards enhancing equal access to quality health and HIV services for persons with disabilities should be based on the social model which is rights-based.

Furthermore, what the UNCRPD brings with it is the spirit of accessibility, non-discrimination and independent living. These addresses the discrimination persons with disabilities have been suffering without any protection from a binding international human rights law. The Convention seeks to promote and protect the rights of persons with disabilities and further promotes the respect for their inherent dignity.

The UNCRPD recognises persons with disabilities as persons everywhere as persons before the law. The Convention also holds the reality that persons with disabilities have got the right to enjoy their right to legal capacity on an equal basis with others in all aspects of life. The Convention further states that “State Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity”. The Article requires State Parties to ensure that safeguards are provided to avoid abuse. It further says that “such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person...and apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body”.

This part of the Convention is very essential in the quest to uphold equal access to quality health and HIV services for persons with disabilities. This is mainly so for those persons with mental and intellectual disabilities who are legally declared as ‘incompetent’ or ‘of unsound mind’. In the spirit of substantive equality, the UNCRPD upholds equal access to health and HIV services for all categories of persons with disabilities while taking into considerations their different circumstances.

The right to legal capacity includes access to support one may require in exercising their legal capacity. This may be in circumstances where the decision making capability of a person with a disability is restricted, but it should not in any way be interpreted as a test for legal capacity. Legal capacity is an inherent right. Rationally, equal access to quality health and HIV services includes the right to access the support a person with a disability may require to exercise their legal capacity.

b.      UNCRPD and Health/HIV
Article 25 of the UNCRPD states that, “States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability”. According to the General Comment on Article 12 of the UNCRPD (Committee on the Rights of Persons with Disabilities, Eleventh session, 2014) the right to enjoyment of the highest attainable standard of health includes the right to health care on the basis of free and informed consent. The Committee further demands that State parties have an obligation to require all health and medical professionals to obtain the free and informed consent of persons with disabilities prior to any treatment. This includes those persons with mental or intellectual disabilities.

As already indicated, if a person with a disability requires support in giving free and informed consent such support should be provided. Health and medical professionals should ensure that persons providing support do not in any way engage in substituted decision making. The person with a disability should be consulted or made to participate in making decisions when accessing health and HIV services. Failure to engage the person with disability to participate in the decision making process when accessing health and HIV services is a violation of their right to exercise legal capacity.

It is therefore essential that the judiciary officials recognise the provisions of the UNCRPD when interpreting the law when it comes to equal access to health and HIV services.

3.      THE PROTECTION OF THE RIGHTS OF PERSONS WITH DISABILITIES IN ZAMBIA
a.       The Persons with Disabilities Act of 2012
The rights of persons with disabilities in Zambia are mainly protected through anti-discriminatory statute and case law. In 2010, the government of the Republic of Zambia ratified the UN Convention on the Rights of Persons with Disabilities. After the ratification of the UNCRPD, the government went ahead to domesticate the Convention through the enactment of the Persons with Disabilities Act of 2012. The Act prohibits discrimination on the basis of disability.
Part II paragraph 6 (I) of the Persons with Disabilities Act 2012 states that “A person shall not discriminate against a person with disability on the basis of disability”. Therefore, persons with disabilities are protected from discrimination on the basis of their disability in the field of HIV services. This protection includes the right to make free and informed consent in all health matters including HIV services. Notably, it is a violation of the rights of persons with disabilities to fail to provide sign language3 interpreters when delivering VCT services. According to the Zambian Disability Law, this qualifies to be discrimination on the basis of disability.

It is also a violation to fail to provide HIV information in Braille for persons with visual impairments. It is a violation to fail to provide HIV information is easy language for persons with intellectual disabilities. It is a violation not to provide HIV services in accessible buildings which will allow persons with physical disabilities to freely and independently move in. All this qualifies to be discrimination on the basis of disability.

The Persons with Disabilities Act further affirms the provisions of the UNCRPD Article 12 by providing in its paragraph 8 (1) that “A person with disability shall enjoy legal capacity on an equal basis with others in all aspects of life”. Interestingly, this paragraph mirrors the provision of UNCRPD Article 12. The protection of the rights of persons with disabilities to participate in the process of accessing quality health and HIV services is guaranteed by the Act in this paragraph. Even the issue of free and informed consent for all categories of persons with disabilities, including those with intellectual and mental disabilities is guaranteed under the Zambian law. It should always be noted that legal capacity includes supported decision making. It also includes advance directives for persons with mental disabilities. Advance directive means, giving instructions on how a person with a mental disability should be treated by the health institution or even the judiciary when they are in a crisis. This instruction may be formal or informal to a next of kin, a close friend or any attorney.

Deliberately, it is important to cover this part of the Persons with Disabilities Act which directly focuses on the judiciary officials. Paragraph 8 (2) states that “The Judicature shall take necessary measures to ensure that persons with disabilities have equal and effective protection and equal benefit of the law without discrimination”. This calls for the State to ensure that the justice system is fully accessible and promoting and protecting the principle of respect for inherent dignity, non-discrimination and independent living. This is a huge challenge to the judiciary officials. On the other hand, it calls for judicial activism. Extremely, judges should ensure that in every case they preside on, legal capacity for persons with disabilities is exercised by all categories of persons with disabilities. Further extremes should be that Judges should refuse to hear any cases of persons with disabilities where the right to exercise legal capacity is denied. This is a protected right in the Zambian statutes.

Paragraph 8 (3) of the Persons with Disabilities Act places the burden of ensuring equal access to justice on the judiciary. This is one of the progressive provisions of the Persons with Disabilities Act when it comes to the protection of all categories of persons with disabilities to participate on an equal basis in the justice system. The Act states that “Where a person with disability is a party in any legal proceedings, the adjudicating body shall take into account the condition of the person with disability and provide procedural and other appropriate facilities to enable the person with disability to access justice and participate effectively in the proceedings”.

These provisions have been views as being difficult to implement by some section of society, especially those operating in the metal health section.

Under its Part V, Division 2, the Persons with Disabilities Act demands that the Ministry of Health should prescribe measures to “provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population…”. This paragraph in the Act protects the right to equal access to health services including HIV services.

The Persons with Disabilities Act has got a supremacy clause. Part 1 paragraph 3 states that Subject to the Constitution, where there is any inconsistency between the provisions of any other written law impacting on the rights of persons with disabilities as provided in this Act or any other matter specified or prescribed under this Act with respect to persons with disabilities, the provisions of this Act shall prevail to the extent of the inconsistency. This paragraph in the Act tends to protect the rights of persons with disabilities against any violations that may be articulated by other laws. The Persons with Disabilities Act tends to ‘amend’ any other statute that is not in line with its provisions in as far as issues impacting on persons with disabilities are concerned. This is how far the protection of the rights of persons with disabilities in Zambia can go in terms of law.

So, the above provisions of the Persons with Disabilities Act 2012 directly protect the rights of persons with disabilities. The law provides for the protection of the rights in the field of education, rehabilitation, mobility, accessibility and participation in political life. The protection of the rights of persons with disabilities in Zambia have further been consolidated by the landmark judgment over the Brotherton vs. ECZ case. The discussion of this case follows below.

b.      Importance of protecting the rights of persons with disabilities
Persons with disabilities have been living a life characterized with systemic discrimination. The discrimination is still rife in many sectors. Therefore, there was need to ensure the protection of the rights of persons with disabilities through the enactment of the Persons with Disabilities 2012. The existence of the law plays a big role in upholding the rights of persons with disabilities. It also prevents discrimination on the basis of disabilities. The public sector is now compelled to avoid discrimination on the basis of disabilities. With the law, persons with disabilities now have got a backing for advancing human rights violation cases to the courts of law.

4.      The Case of Sela Brotherton and Electoral Commission of Zambia
a.       Background
In 2001 persons with disabilities participated in monitoring the general elections. The outcome report of the monitoring was that persons with disabilities found the whole electoral process not accessible. Persons with visual impairments did not have a secret ballot because they were forced to use an assistant against their will. Persons with physical disabilities found it difficult to access the ballot booths because they were placed in rooms which were not physically accessible. Furthermore, persons with hearing impairments could not access electoral information which was propagated through radio and television.

The Electoral Commission of Zambia was given the report with recommendations to make the whole process accessible. Some advocacy work continued until 2011. Persons with disabilities, through the Zambia Federation of Disability Organisations (ZAFOD) remained with no other option but to seek the intervention of the High Court.

b.      Judgment
Judgment on the case was passed on 19th September, 2011, one day before the general elections. The High Court held that ZAFOD had demonstrated that the Commission had unlawfully discriminated against persons with disabilities, and had unlawfully limited the rights of persons with disabilities to exercise their franchise by not providing premises and services accessible to persons with disabilities. The judge emphasised that “all eligible citizens must be free to cast their vote and they must thus, not be hindered in any way. This decision is significant because disability is not specifically included as a prohibited ground of discrimination in article 23(3) of the Constitution of Zambia. The Court read the prohibition against discrimination in article 23 to include disability, after taking into account the provisions of the Persons with Disabilities Act 1996, which did include such a prohibition against discrimination based on disability.

The judge held that the applicants had proved their entitlement to a remedy, but he declined to postpone the elections, which was to take place the next day. Instead, he ordered that the Commission, an autonomous body, should put in place measures, by the next election, to ensure that persons with disabilities are not disadvantaged in exercising their right to vote. These measures had to include erecting temporary ramps, ensuring that polling booths are located on ground floors at polling stations, and providing a tactile ballot guide for voters who are blind or partially sighted but who do not wish to be assisted in casting their vote. In addition, the judge ordered that the Commission formulates and issues a detailed plan and budget aimed at ensuring equal participation by persons with disabilities in the electoral process.

c.       Impact of the case
After the judgment, organisations of persons with disabilities continued to advocate for the implementation of the court orders. Zambia is going into a general election this year, 2016. The ECZ has put in place a comprehensive action plan to ensure persons with disabilities easily participate in the election without any discrimination. ECZ has continued to consult with persons with disabilities in ensuring that they are consulted. Voter education materials are transcribed into Braille and sign language is being used in voter education campaigns. Election agents have been trained on the need to ensure accessibility for persons with disabilities. Tactile ballot jackets will be used to ensure a secret ballot for persons with visual impairments who do not prefer to be assisted.

The above efforts by ECZ, arising from the landmark judgment restores the inherent dignity of persons with disabilities. It increases the opportunities for full and effective participation of persons with disabilities in political life. The actual impact of the case on the rights of persons with disabilities to freely participate in the elections will be tested after the 11th August, 2016 elections.

5.      CONCLUSION
a.       General comments
It is of my considered view that disability and HIV issues are not adequately addressed and redressed by society. If society is not adequately addressing and redressing HIV issues for persons with disabilities, persons with continue to suffer discrimination on the basis of their disabilities in the field of HIV service delivery.
Recommendations
                                                               i.      State Parties to the UNCRPD should take bold steps to carry out awareness creation activities among the judiciary on the provisions of the UNCRPD in relation to health and HIV human rights issues.
                                                                 ii.      State Parties to the UNCRPD should simplify Article 12 and 25 with other related Articles which directly or indirectly affect the right to equal access to quality health and HIV services for persons with disabilities.
                                                              iii.      States should ensure that the training curriculum for judiciary officials; lawyers, magistrates, judges and other supporting staff are educated on the provisions of the UNCRPD. This must be extended to ensuring that the training curriculum of all personnel involved in justice incorporates the provision of the UNCRPD. Of course, this applies to those countries which have ratified the UNCRPD.
                                                                 iv.      In response to the immediate above recommendation, all countries in Africa must sign and ratify the UNCRPD. Further to that, the governments must domesticate the Convention through enacting domestic laws that will protect the rights and fundamental freedoms of persons with disabilities.


Nothing About Persons with Disabilities Without Persons with Disabilities. Include them and Protect their Rights!

Monday, 13 June 2016

Protecting the Rights of Persons with Albinism

By Wamundila Waliuya

I feel a strong chill up my spine. A strong shiver down my feet. I feel tears in my eyes. My stomach just suddenly goes rumbling just like the strong African drums. I hear a strong eerie sound in my ears. I am sweating. Why? Persons with albinism are being threatened for extinction! Seriously sad and uncalled for.

I write this article as part of the commemoration of the “International Albinism Awareness Day” which falls on 13th June, 2016. While in the state of feeling all the strange chills, I am delighted that different governments in Africa agreed to recognise this day and actually go ahead to financially promote the day. It is important to realise that the condition of albinism is a simple condition of the absence of a colouring pigmentation of the skin, eyes and hair.

The pigment is called melanin.

The pigment, melanin protects the body of any human being from the effects of rays called ultra-violet rays from penetrating the skin into the body. These rays may cause some cancer. This is why persons with albinism may be seen with rough skins, dark dots on their skins and breaking or bleeding lips. It is a purely biological condition. The colour of the skin is not in any way associated to any spiritual or religious matters. Persons with albinism are born with the condition because their parents carry biological information on albinism. Such biological information is referred to as genetically passed information. Genetically passed information is passed over to offsprings by the parents. Therefore, albinism is passed over to the children by their parents. It is not a spiritual creation. No!

Persons with albinism are purely human. They are born just like any other human being. They grow and live just like any other human being. They die just like any other person. Persons with albinism get ill and die in the way the rest of human nature gets ill and dies. The myth of persons with albinism disappearing to no way instead of dying is a serious traditional misplacement in reality, fact and truth. Persons with albinism live die and get buried just like any other human being. They are just human beings. Nothing extra about them. The colour of their skin is biological not spiritual!

Do we realise that the naming of persons with albinism and “objects” created by God creates the unnecessary stigma, discrimination and threat of the life of these individuals? Nomenclature, especially in our African traditional language raises uncertainty on whether persons with albinism are natural humans. This contributes to the threat to the right to effective participation in socio-economic activities like education, employment, sports, family life, health and politics. I tend to interact with the associations of persons with albinism in the Southern African region. The President of the Association of Persons with Albinism in Democratic Republic of Congo (DRC) disclosed that persons with albinism where being killed or abducted to enhance political influence by politicians. He said, “Politicians are killing persons with albinism in order to use their parts to win elections”. Obviously any part of the body of a person with a disability can never assist a person to win elections. Never!

The President of the association of persons with albinism in Swaziland told me that “discrimination begins from the family and it is spread to the community. So, change must begin from the family.” The persons with albinism movement in Zambia praised government in for recognizing the 13 June Albinism Day and called for the protection of their freedom to movement and life. It is interesting that the President of Malawi has acknowledged the killing, abducting or threat to life of persons with albinism as a national problem. This is encouraging. When Presidents speak people listen. It is now the responsibility of the Presidents of the different countries in Africa to explain what albinism is. The Presidents must with express and immediate urgency order appropriate Ministries to put in place legislative and administrative measures to protect the rights of persons with albinism to life. Public institutions should also put in place strategies for awareness raising on issues around albinism. Furthermore, States should ensure that associations of persons with albinism are economically and technically equipped to carry out vigorous awareness raising campaigns on albinism. Traditional leaders and healers should also be engaged to understand the realities of albinism. Parents of children with albinism face fear and trauma because of the threat on the lives of their children. States should put in place measures to manage the pre-victimasation, victimization and post-victimisation situations they undergo. The mass media should take broad steps to positively create awareness on the reality and facts around albinism. It is also the responsibility of faith based organisations to preach the human nature of persons with albinism. The message should be that ‘albinism is not a spiritual creation, but a biological condition’. This call should attract immediate attention.

The issue of mutilating, abduction and murdering persons with albinism is a threat to their right to life; liberty and security of person; freedom of movement; respect for inherent dignity; health; independent living and being included within the community; employment; social protection; education; family life, sports, culture and recreation; freedom of association and expression; and protection against inhuman and degrading treatment. It also diminishes the right of persons with albinism to the right to mental and physical integrity. The matter violates the right of persons with albinism to protection from abuse, exploitation and violence. This is occurring in circumstances where many African countries have signed and ratified international human rights instruments which promote and protect the rights of all people including persons with albinism. The matter of equal protection before the law is seriously abrogated! The matter of equal recognition as persons before the law is also seriously being violated. Persons with albinism are persons before the law everywhere and in all aspects of life. Nothing is magical about their skin colour. Nothing at all! Reminder. You never know that you are carrying the albinism gene until you sexually meet and conceive with another person with the albinism gene. So, it is the responsibility of every human being to promote the rights of persons with albinism and de-mystify it. The African States must take the lead and carry the leadership. African Union, where are you over this issue? The EU must carry the flag against the mutilation, abduction and murder of persons with albinism. The matter should be treated as a matter which threatens socio-economic development. States usually undermine issues that affect the so-called minority groups. Persons with albinism may be considered as being few in most African counties but they contribute immensely to the socio-economic development of their countries. Many of them are teachers, medical doctors, lawyers, economists, and entrepreneurs. Many more are activists, musicians and academicians. Why should we deliberately ignore this mass of developmental cadres? Protection of the rights of persons with albinism fully lies on the States. Civil society should compliment the leadership of the State. By the way, the State comprises the executive, judiciary and legislature. Each one of these wings carries fully responsibility in ensuring the effective protection of the rights and fundamental freedoms of person with albinism.

It is important at this juncture to highlight myths with needs to be thrown out of the minds of individuals and the perimeters of the communities. Deliberately, I have4 thought of addressing the myths because of the strong belief in the myths I have come across during my advocacy community work. Some of the myths are already addressed in my paper but will be referred to here:

i)                    Persons with albinism are not a strange creation of God. They are a creation of what ever created the rest of nature.

ii)                  The colour of persons with albinism does not signify gold color of ritual colour. It is the absence of melanin. Melanin is a pigment which gives the skin the ‘black’ colour.