Leprosy carries great social stigma, leading to isolation

On the streets of major towns, lepers dot obscure corners – their misshapen stumps stretched for all to see. The face of these beggars represents the utter squalor into which hordes of lepers have been thrown, away from the confinement of yesteryears.

As the Nation found out, lepers are scattered all over the country with a forgotten disease – and a lifelong burden of social stigma and great discrimination.

This ancient disease — mentioned in the Bible — causes skin lesions and nerve damage and if untreated, leads to severe disfigurement and disability.

Though it is curable and not as contagious as previously thought, leprosy  survivors have over years become the wretched of the earth.

At best, they have been relegated to the backwaters of society with little or no support.

The disease has long carried great social stigma, which used to relegate  lepers  to the fringes the society. Even those who are cured shoulder a heavy emotional burden and are treated as outcasts.

Initially, and since no permanent treatment was not known then, lepers were taken away from family and friends and isolated in camps.

LEPER COLONY

In Kenya, it began  in the 1930s, when Coast MP William Gilbert Lillywhite and the Reverend G. Burns suggested that the only way to deal with leprosy was to create a leper colony where “people could lead their own lives and earn their own living and get such alleviation as modern science was able to give them.”

As a result, a leper colony was established in Kaloleni, with 36 lepers.

During the colonial times, money was set aside to maintain  the lepers, although it was not enough. In 1937, the colonial secretary remarked in Parliament that if the medical superintendent were  to put up a case for more money. “I will sign the special warrant without any hesitation whatsoever.”

The idea was to segregate the lepers from their families.

Although Kaloleni Hospital, built  by the Church Missionary Society (CMS), had an agreement with the government, through which it would receive £1,000 for maintenance, it would not allow lepers into its wards.

RECEIVE CARE

Rev Burns pleaded with the colonial government to establish a camp for them – in the hope  that they would receive care in isolation. “They are too feeble to see, and my entire desire [is to give them]  comfort … until death relieves them of this awful disease,” said the Rev Burns in 1936 as he pleaded for money.

While the Kaloleni hospital was not part of the leper colony established nearby, the area became something of a home for   lepers. Those who got healed never went back home. In  1973, the local member of Parliament, Kazim Mwamzandi, voiced concern about the high number of  lepers in his constituency.

“I often see lepers without hands or toes working. I understand that they are forced by circumstances to work in order to maintain themselves. Why should the government not spend a lot of money on these unfortunate people so that they do not need to work as is the case now?”

“Our ministry does not force them to work,” said Health Minister  Zachary Onyonka.

Most of them had been left to fend for themselves – or simply turned to begging. In 2005, the government forced the more than 2,000 lepers who had been left at the Alupe leprosy centre, Busia,  to go to their  home areas.

Before the collapse of the East African Community in 1977, Alupe was running the region’s leprosy research centre. The East African Leprosy Research Centre was built in 1955 as a memorial to the late John Lowe, a dedicated worker on leprosy in India, who died  that year. That is how the Ministry of Health started running a Leprosarium at Alupe, with about 300 patients.

OUT-PATIENT TREATMENT

In many of the British colonies, the introduction of sulphone drugs, with which lepers could be offered outpatient treatment, it was decided that leprosy villages be created as an extension of the home care system. But due to the social stigma associated with leprosy, most locals did not want leper colonies established in their neighbourhoods. One of the first villages in Alupe was deliberately burnt down in 1948, and the people in the neighbouring villages refused to help their sick kin  rebuild their devastated homes.

Today, the colonial-era Public Health Act still gives the minister for health powers to establish “leper asylums” for the “detention” of lepers. In fact, the minister can acquire sites to build  such asylums.

“For the purpose of preventing the spread of leprosy, the minister may, by order, direct that, from a date named therein until further order, all persons affected with leprosy found within any local area specified in such order shall be removed to, and detained, in an asylum,” says the Act.

The duty of reporting a person with leprosy falls on secondary individuals: “Whenever it comes to the knowledge of any person that some other person within a specified area outside an asylum is affected with, or is suspected of, being affected with leprosy, such first-named person shall forthwith and report such fact or suspicion upon oath to a magistrate of the district in which he is residing”.

ISOLATION ORDER

The magistrate  then issues an isolation order and if a medical officer ascertains that the person is infected, he is “removed to an asylum”.

A person can also present himself to a magistrate and seek to stay in an asylum and only the minister can lift such an order upon the recommendation of a medical officer.

Leper colonies are solitary asylums: “No communication or intercourse shall be allowed between persons detained in any asylum and any person not detained therein who is not an officer or attendant thereof” said the rules.

Again, lepers were treated as “people in lawful custody” and had no recourse to justice even when they were innocently referred there:  “Any person who escapes from such lawful custody may be pursued, arrested without warrant and taken back into custody by any person whomsoever and wherever he may be found.”

Within the asylum, families were allowed to build houses for the detained lepers and this is what created the villages – where some of the lepers are still found to date.