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 3^rd 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 19^th 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 11^th 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!