By Ruwan Laknath Jayakody –

The law of contagion is the persona of disease.

The Government’s Cabinet of Ministers, on 14 August, 2018, approved a proposal by the Ministry of Health to amend the Lepers Ordinance, No. 4 of 1901, in order to provide the necessary facilities to allow for 31 former leprosy patients who are currently cured and living in the Leprosy Hospitals in Hendala and Manthiv, to conduct their societal connections and relations, and who, despite the Government stating that the quarantine of leprosy patients from other persons has been halted since 1983, were, and still are, kept segregated owing to the mandatory nature of the applicability of the said Ordinance.

Previously, in 2017, it was revealed that the Ministry was scheduled to unveil laws to protect the rights and prevent the discrimination of patients of communicable diseases, in particular those afflicted with leprosy, tuberculosis, human immunodeficiency virus and/or acquired immune deficiency syndrome (AIDS), and filariasis.

The laws that were proposed included a new Act in this regard, repealing and amending certain Sections of the Lepers Ordinance which was introduced by the British. The proposed changes included, for example: completely changing the name of the said Ordinance; repealing Section 8 of the Ordinance which affords powers to the authorities, in this case the Minister of Health, to order a leper or alleged leper to be removed and detained (legally provides for the forcible removal and confinement) in a leprosy hospital or asylum; and amending the clause in Section 1:2 in Chapter XXIII of the Establishments Code which deals with the provision of special leave for public and civil servants suffering from leprosy (fully paid leave for no more than 22 months) to instead grant two weeks of paid leave if the patient consents to such and for any additional time to be given as per medical advice. The Ordinance also deals with the assets (property, both immovable and movable) of patients. The Quarantine and Prevention of Diseases Ordinance, No. 3 of 1897 is also applicable in these matters.

The existing laws in this regard are totally unacceptable. The Ordinance was therefore to be amended to be applicable to all, covering all diseases. The said decisions had been taken by a committee comprised of the Anti-Leprosy Campaign (ALC), the Chief Epidemiologist, the Deputy Director General (Public Health Services), the Legal Department of the Ministry, consultant specialists in community medicine and human rights (including civil rights) lawyers.

A Philosophical Inquiry of Leprosy as a Disease

The three Ds: deformity, disfigurement, and disability. This unholy trinity forms the oldest kind of pornography known to man: revulsion porn. It is the pornography of fear, the ultimate expression of which is manifested in the almost primordial fear of pollution and contagion.

The harrowed body of the leper (a maledicted Other), which people, according to the former Deputy Director of the ALC, Dr. Priyantha Karunarathna who spoke to the author, consider as being “afflicted by sin”, manifests the anatomy of suffering in the blighted skin, the stunted, scabby stumps of shriveled limbs and stubby digits, and caved in visages. So much for so called divine judgment (or punishment).

As seen in the images of pain from Persian poetess, Forough Farrokhzad’s ‘The House is Black’, a documentary short about everyday life in a leper colony, in this case, inside a leprosarium in Iran, one that is entombed “like a cage full of birds” – “doves” crying “for justice” where there is “none” and waiting “for light” where “darkness reigns”- these gruesomely “hideous and strange forms” with “woeful souls made unconscious by wounds” are found, touched as they are by the many hydra like stages of the disease, nestled within the solitude of “groans of captivity”. In the chiaroscuro stills of ‘The House is Black’, leprosy is an endurance test.

The leitmotifs include –

i) women with one half of their faces caved in, while the other half is draped with jowls of fat of a milky consistency – stretched across a mouth forming a wide grimace -drooping below a saggy pouch of flesh where an eye socket once stood, inside the veined, vise-like casing in which a lone eyeball loiters, while above it hovers the top eyelid fringed with twitching lashes that nonchalantly observe the lymphatic swelling of the bottom lid;

ii) women and men with diseased, swollen faces and eyes;

iii) boys with no fingers (in certain cases, fingers and toes have withered and become shortened or have had to be amputated, missing the tips or having only the palms without the fingers) and only protuberances for hands (either no hands or the available hand/s being feeble)- their smoothly rounded ends containing scars of corrugations, modelled as if by children using mud, clay and plasticine, left unfinished in their restless listlessness- and upon which a book’s cover rests while the good hand grips the book’s spine, splaying the pages;

iv) bald pated schoolchildren who seem aged beyond their years, sitting rigid with furrowed brows, wearied;

v) the mad doo wop and dance (the swing of snapping fingers) of the strolling bones “condemned to idleness” over jagged stones- barefooted old men in tattered rags, scatting wiggly mouthed glossolalia into the deranged wind outside in the open- a garbled bebop in heat;

vi) men with hollow black pools for eyes;

vii) youth sans noses (or in certain cases, the cartilage of the septum has been destroyed, thereby exposing the nose cavity to the elements), figures of machismo, backs to a wall, smoking cigarettes dangling from half fingers;

viii) women craning over a windowsill to which they latch onto with gnarled, disobedient fingers, a room with a thousand views, and elsewhere, the crippled fingers being flattened using sandbags;

ix) doddery old men stabbing the ground with canes wielded like daggers, attempting a precarious balance while flicking incessantly at their lighters to light their smoking pipes;

x) old men wearing goggles;

xi) men and women with flaccid, inoperative eyelids (one or both and in certain cases having swollen eyebrows and no eyelashes), buzzing flies crawling all over the nooks and crannies of their wrinkly pockmarked faces;

xii) men with only one leg, hobbling about limply on crutches, while others with the same malady shuffle about on the floor and the ground with a spider like gait;

xiii) men with appendages such as the foot with tissue eaten away by necrotic decay, its rough flaked, crusty scaled, gator like infected skin dotted with red spots, scratched, peeled, torn and scraped off using the ritualistic motions of metal pliers;

xiv) those of all ages and sizes with lesions, skin disorders, experiencing distress in joints such as the elbows and knees, laboured breathing, numbness and dullness with regard to the senses and even loss of senses (heat and touch), blindness and partial visibility, and also being affected in organs such as the liver, and also the bone marrow;

and finally,

xv) weaning infants suckling on the nude nubs of nipples fastened on leprosy riddled beasts, tiny hands slapping and groping the lymphatic terrain.

The tragedy of all this is that the leper thus becomes the spook of the collective unconscious (the latter a concept by Swiss psychoanalyst Carl Jung). There is however no need for such demonization. These people of the earth are individual persons, complex, multifaceted human beings and selves who are a part of a community and not wretched subhuman grotesqueries, simple stereotypes, obscene objects or helpless caricatures. They require empathy not pity disguised as ersatz sympathy. Understanding is the need of the hour.

Elsewhere, in ‘Illness as Metaphor’, American critical theorist Susan Sontag talks of a dual citizenship held by those born- one for the kingdom of the well and the other for the kingdom of the sick. Regardless of our preference “to use the good passport”, Sontag notes that “sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

In this work and in ‘AIDS and Its Metaphors’, addressing social stigma and the processes by which diseases acquire meanings and come to be defined socially, Sontag further criticizes the assignation of blame unto the victims/sufferers (the people living with the disease) through the prism of language (terms such “risk groups” and metaphors, in the case of the latter, metaphorical references to military and war related terminology such “fighting the disease”, “reducing mortality”, “immunological defenses” and “aggressive medication” and the idea that a disease is akin to an invader which also serves to convey the “imagined foreignness” or “alien” nature of a disease, and symbols used in describing the syndrome/s {“the indignity of the symptoms”}),and also criticizes the public perceptions and attitudes that result and are formed from the disease being erroneously imbued with associations to personal psychological traits including also certain habits which are again wrongfully condemned as unlawful and/or deemed abnormal by the so called norms of the so called normal within the society (in reality however, this is the mere exercise of freedoms afforded to all), thus lending to a relationship of causality between the personality of the patient and the disease (in short, the illness being the fault of the ill, consequence of the behaviours of the patient, thereby making the sick complicit in their predicament).

According to Sontag, not only does the predilection for explaining diseases from a psychological point of view undermine the understanding of the reality of the disease, but employing metaphors for the purpose, through which meanings of a moral nature were and are incorrectly given to diseases, eventually serve to discourage and silence the victim and cause them to feel shame (up to the point of secrecy and even self annihilation).

Apart from the obvious demonization that occurs, victims in certain cases may also feel a measure of guilt owing to these negative cultural myths. The horror of all this is that the disease becomes, to quote Sontag, an “adjective”, referring to that which is disease-like, disgusting.

What is Leprosy?

Leprosy is a chronic infectious disease caused by a bacteria (Mycobacterium leprae), which affects the skin and the peripheral nerves in the nervous system, causing weakness in the nerve supply. The transmission of leprosy occurs by droplet infection. The disease is transmitted from human to human and there is no known reservoir or vector. Whether there is a hereditary component to the disease is being investigated although there is no evidence to connect genes to the disease thus far, Dr. Karunarathna added.

Socio-economic conditions are closely tied up with leprosy. Even though leprosy affects those across the spectrum, it is more prevalent in impoverished areas such as in densely populated slums and among the underprivileged. Poor nourishment and poor ventilation (due also in particular to overcrowding in spaces) are conditions favourable for the spread of the said bacterium (which spreads slowly) and in certain cases leads patients to query as to when they were exposed via very close contact to it (could be years ago, and could be years before any complications arise), from whom (could be from a work colleague or during the time when they were in school) and how they contracted it, making communities experiencing such conditions very vulnerable to the disease.

Leprosy is an easily diagnosable (mainly by clinical criteria) disease, and is treatable and 100% curable. Treatment (done with antibiotics) depends on the severity of the disease. For the mild type and incipient form of the disease, only six months of treatment has to be given while for the more advanced level of the disease where the bacterium load is high, treatment has to be given for one year. Patients no longer remain transmitters of the disease 48 hours following the commencement of treatment because once the treatment has started, the infective nature of the disease will disappear within 48 hours.

A major issue associated with leprosy is the development of disabilities leading to a loss of productivity and social stigmatization. Patients sometimes lose their employment, housing and place in society years prior to any noticeable changes in terms of health betray them. It is high time that such wickedness and monstrosities in the form of discrimination were put an end to. These disabilities result from reactions occurring at any stage of the disease even after the completion of treatment. The disabilities could be prevented by early detection and treatment.

Around 2,000 new patients are being reported every year for the past decade with patients being reported from 25Districts. In 2016, the majority of the cases were from the Colombo District and the Western Province. Sri Lanka has a high percentage (9%-10%) of patients with visible deformities at the time of diagnosis, attesting to the fact that it was only after six months since the symptoms had appeared that the patients had presented themselves for diagnosis (approximately 50% of the new patients had been diagnosed late). This is indicative of a lack of public awareness in this regard. Children below the age of 15 years with leprosy, percentage wise being 9%-10%, attest to the fact that there has been continuous active transmission through undiagnosed patients.

Colonizing the Leper – Govt Response to the Country Situation

Meanwhile, Dr. Karunarathna said that there were approximately 30 patients at the Hendala Leprosy Hospital, who had no homes/houses and were thus doomed to wait out the rest of their days in the Hospital until their deaths, adding also that there were and are cases where spouses upon finding out their partner’s leprosy status, filed for divorce.

Such is the plight. In the marginalization, segregation, incarceration and isolation promoted in such hospitals (some will argue that they were formed for the purpose of quarantine in order to contain the disease), the hospitals become accursed gulags which not only dehumanize but also treat the shunned patients as if they were pariahs or dregs, which they are not.

Dr. Karunarathna also acknowledged that there was no Government programme of reintegration in this regard, and further added that leprosy patients who were poor, despite there being subsistence provided to them by the Department of Social Services,, were not receiving it as those manning the points of distribution of the subsistence such as the post offices and the Government agents discriminated against those indigent persons living with difficulty with the disability (“Anna laaduru rogiyek awith aadaara ganna/ganda – There, a leper/a leprosy patient has come to collect aid”), thus they were reluctant to go and obtain the subsistence.

“When range Public Health Inspectors (PHIs) visit the homes/houses of patients and follow up to ensure compliance and to carry out contact tracing, they are told not to come. There is however the possibility and probability that others might get the disease. All of this is due to the stigma associated with the disease and the discrimination. The leper colony mentality prevails. Even Government officers fear losing their jobs. Employers think that it is not good to keep someone with the said disease. Patients are traumatized. In this sense, these communicable diseases can be devastating. And we call ourselves civilized. Any workplace and any management must be open minded about this. We don’t advice anyone with the disease to keep away from work or their routines. Instead, we encourage them to engage in such freely. Patients who are suffering must be cared for and treated with dignity,” Dr. Karunarathna explained.

Dr. Karunarathna highlighted that among the 2,000 new cases of leprosy diagnosed per annum, there were cases of leprosy patients being discriminated at places of work, education and at the community level.

Over the past decade, there have been a consistent number of new cases per year, statistically 2,000. Although many activities have been done in this regard by the relevant health authorities including the Ministry, the ALC, hospitals, stations, health staff including medical officers of health (MOHs) and PHIs (the latter two need to be strengthened), the number of cases remains the same. In 2015, the number of cases involving children went up slightly and came down similarly in 2016.

Dr. Karunarathna said that poor awareness among communities about the disease, which resulted in treatment not being obtained during the early stages, and associated societal stigma were the main challenges that they faced in addressing the disease.

Regarding the latter, during the last couple of years, there have been cases where patients have been discriminated at workplaces, school children have been discriminated in schools and have subsequently refused to go to school, and teachers have been transferred following discrimination at the hands of family members and co-workers only to be harassed again at the new place of work while others have had to abandon houses that they occupied in their community and shift places of living. Patients are cornered, marginalized.

Previously, there were social marketing campaigns done in relation to this but at the moment there is none, Dr. Karunarathna noted, adding that due to non-awareness, they would not take treatment for skin diseases and conditions with symptoms such as patches on the skin, painless skin patches, insensate patches, hypo-pigmentation and the thickening of nerves at an early stage, and would wait until complications arose. The disease spreads slowly and symptoms remain dormant for lengthy periods prior to cropping up.

Qualified medical practitioners and doctors including those who engage in allopathic medicinal treatment possess the knowledge to identify this ordinary communicable disease, which is 100% curable, and where 48 hours following treatment, patients no longer are transmitters of the disease.

“People are scared. This must be addressed. This is an ordinary communicable disease. Why then should we be afraid? In 2016, there were 10 to 20 cases involving severe discrimination affecting patients, including being fired from workplaces. Discrimination continues to exist at the lower level. Leprosy treatment staff do not reveal the identity of patients. Patients must not be thought of indifferently. There is also a responsibility on the part of the patient to inform of the disease to family members so that they could be examined by way of screening,” Dr. Karunarathna further explained.

Elsewhere, Dr. Karunarathna pointed out that there were quite a few leprosy patients in prisons, and patients who are beggars, who commence treatment and subsequently default, thereby willfully escaping treatment. In the case of beggars, they provide false addresses and change residences.

“There should be a strategic plan with stakeholders. Mere talking won’t do. What is being done is wholly insufficient. How do we support them? In 2017, we planned to develop a few peer groups with the view of establishing associations with patients infected with leprosy. We are looking to form partnerships with people and groups who are willing to support us and the health teams who inform us in these endeavours. This will be an additional strength. We have to strengthen these areas. Discrimination still exists. We have to address this. This is not a disease to be feared like dengue,” Dr. Karunarathna further emphasized.

The ALC was also to embark on an island-wide programme involving members of an inter-faith religious organization in order to facilitate leprosy screening related activities at the District level.

Dr. Karunarathna said that they had also requested mosques to take up leprosy awareness as a topic concerning health to be taken up every Friday with their congregations during prayer time.

The programme which was meant to address the stigma and discrimination associated with the disease was to invite four persons per each faith from each District and an awareness creating workshop was to be conducted for them. At the workshop, the religious personnel were to be introduced to PHIs too.

“In 2017, in Dhargha Town, Aluthgama, we wanted to conduct a house to house screening programme, yet no one came forward. Along with the area’s MOH, we then decided to consult the mosque. Once the mosque informed the public in the area, they came forward. Religious leaders in the areas can help in these endeavours. We will provide leaflets and the relevant educational material. Apart from this special programme, we conduct regular screenings and mobile clinics,” Dr. Karunarathna elaborated.

Patients must come to the health system and start treatment. They need additional support if they have a disability. If the disease is detected early, it can be reversed, but if it has gone beyond the advanced stage, the disability may become permanent. On the other hand, they must be morally, religiously and socially acknowledged and supported. The disease is not their fault. The legislation cannot be completely overhauled as provisions of it deal with the management of the assets of patients. Their rights must be discussed. They must gain the benefits from the assets. It can be completely repealed after the best way to address these concerns is devised.

“The ALC can’t file actions of discrimination under the law but if help is needed, health staff can intervene and negotiate. At present, patients don’t like to come forward. They remain silent due to the discrimination. They are discriminated at workplaces and they must bear the burdens of their families. Thus, they may not willfully disclose the status of the disease,” Dr. Karunarathna noted.

With regard to controlling the disease, self reporting by affected patients, clinical management including case detection, reaction management, the prevention of disabilities from arising and rehabilitation, and the improvement of accessibility to services, a process which involves consultant dermatologists, health staff including MOHs, and those involved in public, preventive and curative health, and the coordination, monitoring and evaluation of control activities, have to be focused on.

Conclusion

What do lepers watching each other make of each other? In an exchange that takes place within a classroom towards the end of ‘The House is Black’, a schoolteacher looking down at his class, orders a student to name “some pretty things”, upon which the student pauses to think with a lowered head, raises a finger and says, “The moon, sun, flowers, and play”. Then the next student, a boy who smiles, is ordered to name “some ugly things”, to which the young man, pensive only for a fleeting second, replies, “Hands, feet, eyes.” The children laugh and the teacher stares sternly, utterly unamused.

Wither is our humanity? There is no us or them. They are us and we are them. We must live among and we must live with.

Case studies in stigmatization and discrimination

One

The patient in this case was a boy of Muslim parentage in his early 20s from the Gampaha District. He had wanted to join the aviation industry to become a pilot. He had been selected for a related course. During training, he initially noticed patches on the skin. He had not neglected the matter and had gone to a doctor who had prescribed the use of creams. Ultimately, he started experiencing a slight weakness in the hands and the loss of power in his grip also. He had then gone to a neurologist in the private sector and got tests such as a magnetic resonance imaging and a nerve conduction study done. He had then been referred to a dermatologist following which he had been diagnosed as having leprosy.

Because he was in training, he had to inform of this. Thus, he divulged the condition to his teachers and supervisors. Initially, he had been given a grace period to stay at home and complete the treatment and return. Later, he had been deemed as not being suitable enough, and without telling him directly (but through body language), his career there had been terminated. He had subsequently been shuffled from department to department including the human resources department, yet they had not been willing to take him in.

This has had a very big impact on him. Now, he has no job. He is mentally down. He cries. He has completed treatment and has recovered. He and his parents had invested quite a lot of money in the said course. Now, he has to think of something else. He has to change his occupation.

He should not have had to.

Two

The patient is a school teacher from the Matale District who had been diagnosed with leprosy. He was a native of a village. He had started taking treatment from a satellite clinic of the ALC and had requested that his status not be divulged to anyone. Every month, he came to the dermatology clinic. When he had gone to the drug dispensary counter of the hospital to obtain the relevant medicine, it turned out that the pharmacist was known to him. The pharmacist’s child was studying under the teacher. The information had leaked from this end and had reached the ears of the school. All of a sudden, the school principal had asked him not to sign the common attendance book for teachers and had asked him to sign a separate attendance book which had been kept outside. He had been cornered and ostracized. Nobody spoke to him. The students were scared of him. He had become mentally upset. The health staff and doctors had gone and spoken to the principal. She however was not in a state to accept what they were telling. The patient requested a transfer from the zonal education division, which he was then given. Those at the new school were also prepared and had protested saying that they did not want a leprosy patient amongst them. This is an unacceptable act. Yet since the decision to transfer had been taken, the teacher stayed on but severe obstacles were placed in his path by the new school.

Three

In a school in the Colombo District, school children who had developed the disease had been completely isolated from the others, not allowed to talk and dine with the others. All manner of harassment had been meted out to them. Such incidents have been reported from other Districts as well.

Four

In this case, a member of the health staff too had been discriminated in the setting of a hospital.

Five

A worker in a garment factory in the private sector had got the disease. In this instance however, when the factory management had come to know of the matter, they had called the ALC’s leprosy control programme and consulted them on what to do and how to proceed. As a result, the worker was able to keep his job. There are however many cases where patients especially those in Board of Investment industrial zones in pockets with highly endemic populations including those in the Colombo District, do not inform the factories and request the ALC not to do so either, the latter a request which the Campaign complies with.

Of the laws that can be deemed as applicable in cases where there is willful non-disclosure of the leprosy status by and on the part of the patient and the degree of criminality that may be involved, it must be noted that in the Penal Code, in Chapter XIV on offences affecting public health and safety, Section 262 deals with any negligent act which is likely to spread the infection of any disease dangerous to life and Section 263 deals with any malicious act which is likely to spread the infection of any disease, both offences which are punishable by imprisonment or a fine or both.

“However, what will happen to the other workplace peers. This is not acceptable either. The other people must be screened as the disease tends to develop late. Everybody must be safe. There is a social responsibility,” Dr. Karunarathna elaborated.

Disease is personality; cure is humanity.