Ugandan psychiatrists fight stigma and superstition surrounding mental illness

KAMPALA, UGANDA — The people who struggle are isolated and unheard: an autistic boy who was tied to a tree every time his parents had to go work in the fields; a man who claimed he was undressed and locked up in a seclusion room with no toilet, bedding or supervision for eight hours at Butabika National Referral Hospital, the only mental hospital in Uganda.

Kwagala Primah, a lawyer and program manager for strategic litigations for the Center for Human Rights and Development (CEHURD), a non-profit advocacy organization, has seen these examples of mental health injustice in Uganda up close.

“When someone has a mental disability, the first reaction most people would say in Kampala would be ‘take them to the village because they look bad on you here,’” Kwagala said. “Yet here in Kampala you are able to access a psychiatrist.”

In Uganda, the superstition surrounding mental health extends to professionals as well. Many people falsely believe that psychiatrists are mentally ill themselves. This stigma is waning, however, and an increasing number of medical students are choosing to specialize in psychiatry. (Lilly St. Angelo | The Media School)

In Uganda, the stigma and superstition surrounding mental illness has delayed action and progress on the issue for years. Human rights activists and psychiatrists are now pushing for action, however, and are fighting to stop stigma and slowly improve treatment of the mentally ill, both in hospitals and in places that have no access to services.

When the law fails

The man who claimed that his human rights were violated at Butabika Hospital filed a case with CEHURD lawyers against the hospital. In April 2018 however, the case was thrown out by the court because the judge claimed that one patient’s mistreatment could not speak for the treatment of all the patients. The hospital was not punished for any of the actions the man claimed.

The government has let mental health remain on the back burner for much of the country’s history. Primah said that the current legislation in place, the Mental Treatment Act passed in 1964, actually mirrors 1935 British law. This means the country’s mental health legislation is still in colonial times while its former colonizer, Britain, has repealed most of these dated laws in their own current mental health legislation.

Since the late 1990’s and early 2000’s, the Ugandan government has been revising the mental health legislation but nothing has been passed. The government is currently reviewing Mental Health Act 2014 but it has not yet been enacted. Primah said the new bill is very lacking and that CEHURD lawyers concluded that it mirrors 1964 British law.

CEHURD has a unique way of looking at human rights that drives their many projects in advocacy, community empowerment and strategic litigation: using the law to fight the violation of human rights.

“You cannot have the right to life if you are not healthy. You cannot be healthy if you don’t have the right to food, you cannot be healthy if you do not have water,” Primah said, “We look at the right to health as being core at the center of all other human rights of a human being.”

Mental health is included in this core of human rights, Primah said, and cannot be ignored. The Initiative for Social and Economic Rights (ISER) analyzed the 2014 bill and reported that it blurs the lines of a mentally ill patient’s rights with medical necessity, meaning that in one part of the bill, patients are guaranteed human rights, but in other parts, doctors are given the right to take these rights away if medically necessary. ISER goes on to add that in 1995 Constitution of Uganda, although it says human rights can be taken away in public interest, certain fundamental rights and freedoms can not be taken away like the freedom from cruel, inhumane and degrading treatment.

Psychiatry’s stigma

One of the biggest issues Uganda faces in the mental health field is a lack of doctors. Dr. Caroline Birungi, lecturer in the department of Psychiatry in Makerere University’s Health Sciences and psychiatrist at Mulago National Referral Hospital, made a decision that not many medical students made when she was studying at Makerere University, a major university in Kampala, Uganda. She chose to go into psychiatry.

“Initially, as a medical student, we used to look at psychiatrists or people dealing with mentally ill patients as mentally ill themselves,” Birungi said. “That’s why you would find that it would be difficult for medical students to pursue a discipline in psychiatry. Because they would think once you take on a discipline in psychiatry, you would become psychotic yourself.”

Similar to the United States, there has always been a stigma around mental illness. Many Ugandans think mentally ill people are weak or pretending. But there is also an added element of superstition in Uganda. Those who believe in witchcraft or magic think those affected by a mental illness are cursed. The superstition around mental illness in Uganda not only affects the people who struggle with the illnesses but the people who commit their lives to helping these people. The ongoing shortage of psychiatrists is caused in part by the stigma surrounding the profession. As times change though, the myth is slowly waning.

“In the 80’s and 90’s, you would hardly find anyone applying to join the field of psychiatry but nowadays we have many students,” Birungi said. “Currently we have five in second year and four in third year. In the old days we would have one (student per class). So there is improvement. They are no longer stigmatized as much as they used to be.”

Birungi said professors also now talk to their medical students about how everyone is vulnerable to mental illness, and how mental health professionals are no more prone to it than everyone else.

Access to treatment

In Uganda, a person can find access to HIV medications even if they live in a rural area. If they have a mental illness or disability however, access to care is limited. In regional hospitals, the limited access is due to drug shortages and lack of psychiatrists. In primary care health clinics, it’s due to lack of training. Early detection of mental illnesses and developmental disabilities in children is especially poor in most of the country.

Primah worked with the mother of the autistic boy who used to be tied to a tree. When the boy was a baby, the parents knew something was different about him. The mother took him to every health facility in the area but no one could tell them what was wrong. In Uganda there is no knowledge of how to screen children at a primary care level for developmental disabilities such as autism. Parents, therefore, have no knowledge of how they can help their children when they are born with these challenges.

The boy was 13 when he finally was diagnosed. He could not talk, he could not interact with others, and he would fight with other kids and beat them up. So his parents kept him detained.

“They’d tie him to a tree and go away to the farm. So it could rain on him, shine on him and because his skin was so sensitive, he could not wear any kind of clothing,” Primah said.

Primah said if the parents knew about the autism sooner, the boy would be able to speak by now with help from speech therapy. They would have known that they could dress him in loose cotton clothing to soothe his sensitive skin. These simple things that can be learned from an early diagnosis of autism can help quicken the progress to the child’s abilit
y to be independent.

In their analysis of Mental Health Act 2014, ISER says that although the bill is aimed at providing more mental health services at community health centers, they must also ensure that these centers will be properly stocked with medications and mental health personnel.

When it comes to mental health in Uganda, there is still stigma and superstition to overcome and human rights to defend. Birungi’s students will be the country’s next generation of psychiatrists. The impact they have in their country will determine the future of mental health. They will have to be not only doctors, but advocates so that Uganda can forge a stronger healthcare system for the mentally ill and protect their humanity as well.