Overture of Poor State of Lepers and Stigma attached

Since ages, Lepers are the most neglected section of the society as Leprosy is a disease, which still strikes fear in the societies as a mutilating, disfiguring, contagious and incurable disease. Because of the horrifying nature of the enigmatic physical disfigurement and since no cure was discovered until the 20th century, leprosy has, for centuries, been a highly stigmatizing disease. Though leprosy is not a disease of the poor, yet it affects poor to a much greater extent because of their social and economic vulnerability. The stigma attached to leprosy leads to loss of employment even before manual labor becomes more difficult due to disability, which often results from late or no treatment.

It also leads to exclusion from society, causing physical and emotional distress that even to this day in some parts of India uphold the belief that leprosy is a divine curse, a punishment of the past sins, and a result of immoral sexual behavior.

These beliefs reinforce the image of the leper as being physically and morally unclean, to be blamed for contracting the disease and therefore to be ostracized. The repulsive physical image, the fear of infection and the belief that it is incurable are the root causes of the inhuman treatment that is often meted out to those who have leprosy. Thus already the lepers are facing neglect of the society and authorities despite early British mission efforts in India.

The Lepers who are the most neglected community of the society reside totally as destitute in towns and specially in places of holy pilgrimage of Hindus and by begging and by getting the eatables given by the pilgrims at charity they anyhow lead their life. Being the most neglected section of the society, Government and administration does not care to provide any kind of facilities including housing the lepers reside in an isolated state mostly bound to encroach public lands by making temporary huts and jhuggis which are commonly known as Kushtha Ashrams or Leper Colonies.

Guidelines and Commitments for Rehabilitation of lepers

These poorest lepers in the most of the states, for there being no welfare plans are bound to live in inhuman conditions without proper arrangements for living and without any assistance being given by the State whereas the Community Based Rehabilitation Guidelines (CBR) framed by the National Leprosy Eradication Programme, Directorate General of Health Service (Ministry of Health & Family Welfare) admit:
Rehabilitation includes all measures aimed at reducing the impact of disability for an individual, enabling him or her to achieve independence, social integration, a better quality of life and self –actualization. Rehabilitation can no longer be seen as a product to be dispensed; rather rehabilitation should be offered as a process in which all participants are actively and closely involved.

These guidelines framed by the National Leprosy Eradication Programme describe the rehabilitation of lepers as providing them a better quality of life and the same have not been followed by the State Governments.

Suggestions of Rehabilitation by NHRC

The National Human Rights Commission (NHRC) held a national conference on leprosy and in its background note it has given suggestions after a national seminar and has given various suggestions including:

• State Governments must take steps to improve living conditions in the colonies where people affected by leprosy reside.
  
  
• Leprosy affected and cured persons and their families should live a dignified life. For this, they need to be empowered with basic human rights life right to education, right to work, right to health, right to food right to housing and other economic, social and cultural rights. They have access to all the rights without facing any kind of discrimination.
  
  
• There are no leprosy specific schemes and these should be designed. There is no scheme for allotment of land to them.

Specialized bodies with responsibilities to Act

It is a documented fact that there are several guidelines framed by the National Leprosy Eradication Programme which is a centrally sponsored Health Scheme of the Ministry of Health and Family Welfare, Govt. of India. The National Leprosy Eradication Programme is headed by the Deputy Director of Health Services (Leprosy) under the administrative control of the Directorate General Health Services Govt. of India.

While the NLEP strategies and plans are formulated centrally, the programme is designated to be implemented by the States/UTs. The Programme is also supported as Partners by the World Health Organization, The International Federation of Anti-leprosy Associations (ILEP) and few othe Non-Govt. Organizations. Schemes and guidelines framed by the Mission have to be followed by the states through their State Leprosy Officers, but the same are not being taken care of by most of the state Authorities.

Often in mass level demolition drives slums of lepers are demolished and as they are bound to encroach on public land but after demolition of the houses the lepers and their families are rendered homeless and are bound to suffer in the open-air in adverse weather putting their life at risk.

Recognition of Leper’s Legal Problems by Law Commission of India

Law commission of India in its Report No. 256 of April 2015 titled as “Leprosy Affected Persons and the Laws applicable to them” at page 48 recommends:-

(iii) Provisions enabling the government to undertake affirmative action in the following areas be introduced:

• Health
• Ownership of property
• Social Welfare
• Education
• Employment
• Awareness and training
• Participation of Persons affected by Leprosy in the formulation of policies
• Setting-up of a Central and State Commission on Leprosy…,

The report of the Law Commission in its paragraph 7.10 states

9 The key aspects that require attention in the context of such a legislation include the following:

1. Measures against discrimination
2. Land Rights
3. Right to Employment
4. Educational and training opportunities
5. Appropriate use of Language
6. Right to Freedom of Movement
7. Concessions during treatment
8. Social Awareness
9. Welfare Measures

The report recognizes a major problem of Lepers that due to their untouchability and seclusion and there being no rehabilitation scheme they are bound to encroach the lands and evicted and it’s a cyclic problem as Govt. has not taken care to rehabilitate these poor destitute Lepers.

The Report of Law Commission in its Page 41 emphasised the problem as:

Land Rights.

As has been noted previously, the long-standing practice of moving Persons affected by Leprosy and their family members from mainstream society into clusters near hospitals needs to be curbed. These clusters have come to be known as Leprosy colonies, and are usually established outside the city limits. This practice reinforces segregation and deprives the Persons affected by Leprosy and their family members from owning or possessing property. These colonies are either established on government land including forest and railway lands or private land given for the purpose of establishing such colonies by private individuals or institutions.

As noted previously, there are at present about 850 colonies in India. It has also been estimated that no new Leprosy colonies have come up in the last 14 years, although people diagnosed with the disease continue to migrate to existing colonies.

Further, people who have been living in the colonies for years together wish to continue residing there with their families including children. However, in spite of their continued residence in these colonies, many Persons affected by Leprosy and their family members still do not have any land rights and live under the constant threat of eviction. The lack of ownership and title to land also discourages Persons affected by Leprosy and their family members from developing the colony.

All the lepers residing across the different states, wherever demolition and eviction drives are conducted to remove encroachment from public land are the worst sufferers as they have no means to rehabilitate themselves and state administration after demolishing their shelters never cares to rehabilitate them or to address any of their plights and sorrows.

Judicial acknowledgment of Right to Shelter

Supreme Court in Olga Telis & Ors. vs. Bombay Municipal Corporation & Others observed:
As we have stated while summing up the petitioners' case, the main plank of their argument is that the right to life which is guaranteed by Article 21 includes the right to livelihood and since, they will be deprived of their livelihood if they are evicted from their slum and pavement dwellings, their eviction is tantamount to deprivation of their life and is hence unconstitutional.

For the purposes of argument, we will assume the factual correctness of the premise that if the petitioners are evicted from their dwellings, they will be deprived of their livelihood. Upon that assumption, the question which we have to consider is whether the right to life includes the right to livelihood. We see only one answer to that question, namely, that it does”.

In Shantistar Builders vs. N.K Totame the Apex Court observed as:
Basic needs of man have traditionally been accepted to be three-food, clothing and shelter. The right to life is guaranteed in any civilized society. That would take within its sweep the right to food, the right to clothing, the right to decent environment and a reasonable accommodation to live in.

The difference between the need of an animal and a human being for shelter has to be kept in view. For the animal it is the bare protection of the body; for a human being it has to be a suitable accommodation which would allow him to grow in every aspect - physical, mental and intellectual”


In, Chameli Singh vs. State of UP , the Supreme Court has held:
In any organised society, right to live as a human being is not ensured by meeting only the animal needs of man. It is secured only when he is assured of all facilities to develop himself and is freed from restrictions which inhibit his growth. All human rights are designed to achieve this object. Right to live guaranteed in any civilized society implies the right to food, water, decent environment, education, medical care and shelter. These are basic human rights known to any civilized society.”

Thereafter in plethora of judgments the Supreme Court kept on amplification of the Right to Shelter. In a summarized manner A reference can be made to:-

1. U.P. Avas Evam Vikas Parishad v. Friends Coop. Housing Society Ltd. (1996): The Supreme Court affirmed that: The right to shelter is a fundamental right, which springs from the right to residence under Article 19 (1) (e) and the right to life under Article 21.
   
   
2. People’s Union for Civil Liberties v. Union of India and Others: In this case, a series of orders were passed for ensuring food to the needy under various schemes. The case also included the issue of homelessness and resulted in several landmark orders regulating shelters for the homeless across India.

Right to Housing as a Human Right

The above judicial dictums are in conformity with the right to housing which has been recognized as a human right under Article 25(1) of Universal Declaration of Human Rights states:
Article 25 (1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

Milestone Judgement in Pankaj Sinha in 2018

Finally a landmark was erected when the Supreme Court of India on 14th September 2018 pronounced Judgment in Pankaj Sinha Vs. Union of India The Supreme Court in this petition of a visually challenged Lawyer ordered that awareness be spread about the free treatment available for leprosy patients and directed the central and state governments to formulate rehabilitation schemes for those suffering from the disease.

A bench of then Chief Justice Dipak Misra, Justice A.M. Khanwilkar and Justice D.Y. Chandrachud issued a slew of directions to the Centre and the states and asked them to ensure proper treatment of leprosy patients and end discrimination against them.

It directed that a massive awareness campaign be carried out by the government on curability of leprosy, adding that patients should not be isolated by the family or community as the person can lead a normal life. The bench directed to "end stigma" against leprosy patients and to make sure they get adequate medical care and rehabilitation measures.

The most prescience lies inside direction (xiv) of this judgment which directs:-
“The Union and the State Governments must pro-actively plan and formulate a comprehensive community based rehabilitation scheme which shall cater to all basic facilities and needs of the leprosy affected persons and their families. The scheme shall be aimed at eliminating the stigma that is associated with persons afflicted with leprosy.”

This direction commands towards cater all basic facilities to the lepers which we all know essentially includes housing which is the prime trouble being faced by the lepers since ages and was never resolved despite several commitments by the statutory bodies.

Uttar Pradesh lead the way by Leper Houses Move

The state of Uttar Pradesh became pioneer in India by providing free houses to lepers under its Chief Minister Housing Scheme. Within a short duration of such announcement on 22nd December 2019 in keys of newly built houses were provided to 500 lepers in a function held at Lok Bhawan Lucknow.

This is the first effective step towards housing of lepers, which any of the State Government has taken post directions in Pankaj Sinha Vs. Union of India for formulation of comprehensive community based rehabilitation scheme for leprosy affected persons.

Conclusion
Unfortunately unlike Uttar Pradesh other State Governments till date have not even initiated any scheme to provide adequate housing to the lepers.The brunt of inaction of State Governments in rehabilitation is being faced by lepers who are bound to reside in slums on encroached lands. The Hon’ble Surpeme Court has declared “Right to Shelter” as a fundamental right being part of Right to Life in Article 21 of the Constitution of India but in most of the states of India it is being violated by the Government in regard of these neglected classes of lepers. Government authorities have not understood till date that the Right to Life `is not a Right to mere animal existence.

The inaction on the part of the State Governments in not implementing the welfare schemes for the lepers including providing housing for them is a failure of the State Governments is putting the lepers and their families of in great hardships in their existing slums due to the extreme weather conditions making their survival difficult.

The lepers affected by demolition of their housing due to demolition drives, do not have electricity, water supply, medical facilities and the monsoon results in breeding of mosquitoes further endangering their lives. These destitute lepers are exposed to dengue, malaria, chikungunya and other mosquito borne diseases as they are exposed to other infections and diseases.

On account of the lack of adequate housing, the Lepers are forced to live on the road, which adversely affects the safety and security of their women, increasing their vulnerability to violence and abuse. The elderly persons of their community face extremely vulnerable condition.

To comply with the fortitude which Supreme Court has shown in its dictum passed in Pankaj Sinha case it is high time that on war foot effective steps be taken to improve living of lepers by providing them right of housing and shelter and rehabilitation which is most momentous pictogram of dignified life which is a declared integral constituent of Right to Life .

End-Notes:

1. http://nlep.nic.in/pdf/cbr.pdf
2. background note and recommendations made by National Human Rights Commission on 17.04.2015 https://nhrc.nic.in
3. http://lawcommissionofindia.nic.in/reports/Report256.pdf
4. (1983) 5 SCC 545
5. (1990) 1 SCC 520
6. (1996) 2 SCC 549
7. (1997) 11 SCC 121.
8. People’s Union for Civil Liberties v. Union of India, W.P. (C) No. 196 of 2001
9. https://www.un.org › universal-declaration-human-rights
10. 2018 0 AIR(SC) 4297
11. Ibid
12. Ibid

Written By: By:-Dushyant Mainali, Advocate - High Court of Uttarakhand
(Author is an Advocate from Uttarakhand, fighting the legal battle of the displaced leper families of Haridwar, Uttarakhand)