"Conditions in society which are not defined as a problem and for which alternatives are never proposed, never become policy issues. Government does nothing and conditions remain the same." T.R.Dye, Policy Analyst
(From the book "Understanding Public Policy")

DISABILITY LAW AND HIV/AIDS

http://www.lawyerscollective.org/lc-hiv-aids/Abstracts/abstracts.htm
Discrimination and Disability

Exclusion and segregation of people with disabilities by society as well as the State (i.e. under law) has never been viewed as discrimination until recently. Disability in India has been based on the assumption that the problems faced by people with disabilities, such as unemployment and the lack of education, are inevitable consequences of the physical, mental or functional limitations of the disability itself (the approach of the medical model of disability). This approach views the disabled person as having deviated from the norm. However it was never recognized that the inferior social and economic status of people with disabilities could be a result of the prejudice of society towards such people (the approach of the increasingly favoured social model of disability). This approach opposes the assumptions of normality of the able -bodied, espoused by other models. The social model is premised on the idea that the economic, social or legal structures of society impede the individual. Society creates disability by accepting an idealised norm as given and by measuring deviation therefrom. The disadvantage, exclusion and inequality many people with disability face are therefore not taken for granted, but perceived as a form of injustice which requires a legal and political response. The international disability movement accepts the social model of the definition of disability.

It is the common experience of several persons with disabilities that they are unable to lead a full life due to societal barriers and discrimination faced by them in employment, access to public spaces, transportation etc. People living with HIV/AIDS are in a similar position. Due to the stigma attached to their medical condition, people living with HIV/AIDS often face discrimination in healthcare and employment and are prevented from fully participating in society. They are a marginalised group in need of inclusion within the mainstream and entitled to legal protection against discrimination. Could it then, be argued that the loathing and isolation that people living with HIV/AIDS suffer, creates an environment where they are, in effect, disabled?

The issue of discrimination has been addressed under the Indian Constitution where the individual is guaranteed anti-discriminatory, inalienable fundamental rights. However these rights can be enforced only against the State or State-controlled bodies and not against private parties.

This leaves the entire private sector virtually uncontrolled and free to discriminate against any individual. In light of the fact that there is a sharp increase in the number of people seeking healthcare and/or employment in the private sector, law and policy needs to address this situation. Though employment in the private sector is covered to a limited extent by law, law does not regulate discrimination in private healthcare. The rampant discrimination particularly in the HIV/AIDS scenario calls for immediate innovations in law.

Disability law in India has been a recent development that attempts to alleviate the position of people with disabilities. However it has its limitations. As discussed below Indian disability law prohibits discrimination in the public sector against persons suffering from disabilities but is applicable only to limited types of disabilities. HIV/AIDS is not covered within the scope of the term 'disability'. It is, therefore, important to discuss whether a separate anti-discrimination law is necessary to protect the rights of people living with HIV/AIDS or expand the scope of disability law in India to include HIV/AIDS as a disability and extend protection even within the private sector.

Anti-discrimination laws were first resorted to in the United States of America and addressed discrimination issues against which protection was not guaranteed by the American Constitution. Thus, the practices of an increasingly powerful private sector were sought to be controlled by such laws. This model has since been followed by other foreign jurisdictions.

Anti-discrimination legislation in various countries was originally confined to laws against discrimination on the grounds of race, sex, ethnic background etc. Disability discrimination came into focus much later. The development of anti-discrimination protection concerning disability arose due to the fact that various groups of the disability movement developed a strong focus on rights, such as the right to equal treatment and non-discrimination and the right to life. The recognition of such rights of the disabled has formed the basis for anti-discrimination legislation that addresses issues of their concern. It has also had the effect of rights of persons with disabilities being recognised in human rights laws of broader scope. The first legislation of this kind was the Americans With Disabilities Act, 1990 that has been a model law followed by other nations.

The ADA is the most inclusive anti-discrimination legislation that addresses issues of people with disabilities. The concept of 'disability' under the ADA is structured as a three-pronged definition. A person with disability is defined as a person with a physical or mental impairment, which substantially limits one or more major life activities, or a person with a record of such impairment or a person who is regarded as having such impairment. Therefore any person 'having a disability,' 'having a record of a disability' or 'regarded as having a disability' comes within the purview of the ADA. This third prong is significant in the context of HIV/AIDS. HIV/AIDS is specifically regarded as a disability under the ADA and a person living with HIV/AIDS is 'regarded as having a disability'. Much too frequently persons living with HIV/AIDS experience discrimination in the workplace, at places of public service or within the community. There are instances when exclusion of persons occurs due to the myths, fears and stereotypes associated with a particular disability or disease particularly communicable diseases, mental illnesses etc.

The scope of the definition of 'disability' under the ADA is wide enough to include persons who are discriminated against due to fear or myth associated with their condition despite the fact that the physical or mental impairment is not apparent. This attitude of society manifests itself in the treatment meted to people living with HIV/AIDS creating barriers that often result in exclusion and discrimination. Under the third prong of the definition of 'disability' under the ADA, people living with HIV/AIDS are protected against discrimination even though their physical impairment is not apparent. The ADA protects people living with HIV/AIDS from discrimination in various sectors including employment and healthcare. It is this law which has brought the private sector in the USA within its purview and sought to prevent its discriminatory practices.

As opposed to the ADA, the disability law in India is limited in its scope and application. The Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (PDA) addresses the needs of very few categories of disability. It protects persons with disabilities against discrimination only in the public sector.

The definition of 'disability' under the PDA, covers persons with visual impairment, hearing impairment, leprosy cured, locomotor disability, mental retardation, and mental illness. This is a narrow definition of 'disability' as compared to other countries which cover numerous other ailments such as cancer, heart disease, diabetes, epilepsy, muscular dystrophy, communicable diseases like tuberculosis, hepatitis, HIV infection and AIDS.

The PDA makes provisions for free education of children with disabilities and schemes for non-formal education, special schools, reservations and non-discrimination of persons with disability in government employment and in public transport. The PDA also provides that government and local authorities undertake research and development for prevention of disabilities.

However, the PDA does not cover the private sector in any of its schemes or provisions. It only mandates that government provide incentives to employers, both public and private, to ensure that at least five percent of their work force are persons with disabilities. It does not refer to healthcare and is limited in scope so far as the categories of disability covered by it are concerned. This excludes people living with HIV/AIDS from the legislation's purview.

Each disability has different needs since there are major physical and mental variations in different disabilities. Though their needs are different, people with disability when considered as a cohesive group face the same discrimination whether in the fields of employment, education, healthcare or participation in society. Despite the fact that the physical or mental impairment of people living with HIV/AIDS is not apparent, they are not regarded as able-bodied individuals. The stigma associated with their condition is so immense that, they are most often denied access to treatment and discriminated in the workplace, at times resulting in termination of employment and prevented from participating in mainstream society.

Although the interests of people with disability are protected under the PDA to a limited extent, people living with HIV/AIDS are not provided any statutory legal protection against discrimination. The rights of people living with HIV/AIDS are presently protected only under the common law and the Indian Constitution. If discrimination is to be effectively countered it is imperative that the private sector be made legally accountable either through creation of anti-discrimination legislation or amendments to the PDA so as to expand its scope to include HIV/AIDS and the private sector.

The issue of inclusion of people living with HIV/AIDS as persons with disability within the purview of the present disability law in India is one of great significance. Most disabilities manifest themselves overtly and in such cases the physical impairment is obvious. HIV/AIDS is a condition that has created such great stigma and fear that although the physical impairment is not visible the discrimination suffered by persons living with HIV/AIDS is no less, if not greater than other persons with disabilities. It is the stigma that creates the disability and although the impairment is not similar, the discrimination is.

Legal innovations such as the ADA in the United States have greatly improved the plight of persons with disabilities due to the efforts of disability groups. This law has embraced not only conventional notions of disability but expanded the meaning to include those who are prejudiced by society and thus 'disabled'. It is similar legal initiatives that need to be considered in India so that the lot of her persons with disabilities improves.

In keeping with the objective of creating awareness on HIV/AIDS related legal and ethical issues, the Lawyers Collective HIV/AIDS Unit organized a series of meetings in Hyderabad, Bangalore and Mumbai with ministers, bureaucrats, the judiciary, the press, healthcare professionals, positive peoples groups, trade unions and members of NGOs between 20th - 22nd December 2000. Justice Michael Kirby, an eminent judge of the High Court of Australia and a world-renowned HIV/AIDS activist was hosted by the Lawyers Collective HIV/AIDS Unit in India and addressed the meetings, as did Anand Grover, Project Director of the Unit.

The Unit co-organized a symposium in Bangalore with the Karnataka State AIDS Prevention Society and National Law School of India University on 20th December on HIV/AIDS: Law, Human Rights & HIV/AIDS. Justice Kirby gave the keynote address and Justice Vishwanath Shetty of the Karnataka High Court and the Minister of Health, Government of Karnataka gave the presidential and inaugural addresses respectively. Justice Kirby emphasized the vital role that human rights initiatives played in Australia to stem the spread of the epidemic and how similar measures could help in India. He emphasized that legal reform vis-à-vis sex workers and drug users, albeit controversial yet bold, went a long way in controlling the epidemic. He mentioned that it was the bipartisan approach of concerned politicians that made this possible. An enriching highlight of this symposium was the courage shown by the wife of a PLWHA who spoke before the participants and explained her difficult yet successful battle to attain anti-retroviral treatment for her husband from his employer. The Unit also co-organized a Public Meeting in Bangalore with AIDS Forum Karnataka on 20th December evening where members of the public, PLWHA, NGOs and students voiced their concerns and heard an address from Justice Kirby. Justice Kirby urged people to raise their voices in unison with PLWHA and support their cause of empowerment. He stated that it was necessary to mitigate the fear associated with HIV/AIDS and openly discuss hitherto unspoken issues of sex and sexuality in a healthy and honest manner if the epidemic was to be effectively dealt with.

On 21st December Justice Kirby gave a keynote address at a symposium in Hyderabad co-organized by the Unit with the Andhra Pradesh AIDS Control Society. The symposium involved members of the judiciary, legislature, lawyers and NGOs on HIV/AIDS: Legal & Ethical Issues. There was very useful and illuminating interaction between Justice Kirby and members of the audience on the law and HIV/AIDS. Justice Kirby mentioned that it was the human capacity for love that would show us the way in tackling the epidemic and that India should not be complacent in dealing with it. He said that the law could only play a limited role in dealing with HIV/AIDS by creating an enabling environment. However it was upto civil society to respond positively by showing compassion, large-heartedness and responsibility if effective strategies are to be evolved.

Some of the meetings in Mumbai on 22nd December were organized jointly with the Maharashtra State AIDS Control Society (MSACS), the Mumbai District AIDS Control Society (MDACS) and Sion Hospital. The first was a meeting between Justice Kirby, the Minister of Health, State of Maharashtra, the Chief Secretary and Secretary of Health of Maharashtra and other secretaries of various departments of the state government aimed at sharing experiences in Australia and India and sensitising policymakers on the key issues arising in the HIV/AIDS context. There were a number of issues that arose and point of views that were expressed at this meeting. The primary issue discussed was to place the issues of health and HIV/AIDS on the national and state agenda as an emergency and to commence innovative and even radical initiatives in order to cope with the unchecked spread of the epidemic. The issue of access to drugs was discussed at this and other meetings as non-accessibility and high cost of drugs and healthcare in India is another issue of concern. This was followed by a meeting of Justice Kirby and healthcare workers at Sion Hospital where Justice Kirby emphasized the need for the healthcare sector to be sensitive to the needs of people living with HIV/AIDS (PLWHA) and pro-active in the protection of their rights. Justice Kirby then addressed a meeting of PLWHA where he inspired them to demand their rights and their rightful place in larger society. This was a unique and moving occasion that gave an impetus to PLWHA to empower themselves. This meeting provided a platform for them to share their experiences and voice their concerns. A Public Meeting was then held and was attended by several persons including members of NGOs, PLWHA groups and various trade unions from Mumbai. Addressing the Public Meeting, Dr. Alka Gogate, Director of MDACS stated that the HIV/AIDS issue had gone beyond the health sector now and the employment sector as well had been very badly affected. She pointed out that the support shown by trade unions for the rights of PLWHA indicated how important the issue of HIV/AIDS was for workers. Now was the time, she said, for all sectors to join hands and work to eradicate HIV/AIDS. The enthusiasm expressed by members of the trade unions and NGOs was immense. The emphasis in these meetings was on the rights of PLWHA. Justice Kirby, in his address, stated that there is need for another Gandhi who can lead Indians through the epidemic. It is time, he said, that all groups of PLWHA get together and mobilize the community to fight for their rights and break the silence. He pointed out that it is extremely important that we clear the myths that still prevail and forge ahead with a positive attitude. Justice Kirby emphasized that it was essential for pro-active and visionary initiatives of politicians and policymakers to recognize the critical nature of the epidemic and act quickly and decisively to control its spread if our children and future generations are to be saved.

Contributions by Meghna Rajan, Nidhi Dubey, Vivek Divan and Veena Johari