Bringing health support and freedom to the mentally ill

"Changawa, the Man in Chains" — that is the title of an interactive film shot in the hinterlands of Kilifi County. The chains in the title are not figurative.

They are real, cold, brutal metallic chains. And the man isn’t a fictional character. He developed a mental disorder years back and his kin chose to tie him up so he doesn’t get lost.

The film came to be due to efforts of Italian filmmaker Simone Grassi. He was on a mission to document the history of the Mijikenda when he spotted Changawa — who was chained inside a hut by his family. He was suffering from schizophrenia and had not received medical attention for many years.

Schizophrenia is a type of mental illness that is associated with aggressive and violent behaviour.

For eight years, Simone documented efforts to treat Changawa — first by traditional healers, then later faith-based healers and finally healthcare professionals.

When his story came to light, researchers and doctors began re-evaluating and revising approaches to mental healthcare, and this has changed conversations around mental health in a county where such disorders are considered a curse.

Simone fell in love with the Mijikenda culture. He now travels to Malindi from Italy every year.

'HOUSE ARREST'

He was even baptised and given a Giriama name — Gona. In January 2012, the Italian documentarian travelled through the Mijikenda territory while filming the community’s cultural activities for the archives of Malindi District Cultural Association (Madca).

Madca collects information about the Mijikenda including the history aiming to revive the community’s cultural activities.

“We were going around collecting stories that would be of interest to Madca. My crew included Mama Margaret, a traditional healer who was the cook; Kazungu wa Hawerisa, the poet-driver and Emmanuel Munyaya, my camera assistant and translator,” Simone told Lifestyle.

One day they went to shoot in a village near Baricho, where they were to interview the son of Kahindi wa Kadzomba, an influential and legendary witch catcher who passed away a few years ago.

According to a diary that Simone wrote, the family had a reputation for housing powerful traditional healers over several generations.

At the end of the day, while they were leaving, Simone heard a metal clinking noise coming from a nearby hut.

Instinctively, he peered through the wood gratings and saw a man sitting on the floor with a heavy chain link locked around his leg.

Though in utter shock, he could not do much, and he went to his car. That night, he asked his crew if they knew the chained man.

CHANCE OF RECOVERY

To his surprise, they said they knew him and that his story was well known in the area.

“His name was Changawa due to his genealogy. Due to the early talent he showed as a schoolboy, they considered his to be predestined to belong to the group of authentic traditional healers like his father. Regrettably, due to his mental problems he was now living in those miserable conditions,” writes Simone in a diary.

The next morning, Simone and the group went back to the homestead. He offered to give the chained man assistance as well as document the process.

Simone later left for Italy but kept in touch with the crew and Madca members

In January 2014, he travelled again to Malindi with the Madca committee members and diviners to discuss how to help Changawa.

According to Simone, the diviners said Changawa’s mental distress was due to spiritual issues and that if properly treated, he had a chance of recovery.

After obtaining permission from the family to start treating him as well as filming, the traditional rituals began, with Simone following every step for more than three years.

“I am not a resident and was documenting the processes while travelling back and forth from Kenya to Italy. The story was not staged. It is an observational documentary. It was me following them with my camera,” he said.

Even though Changawa did benefit from the care and attention received, writes Simone, he was still affected by chronic and severe mental disorders.

PATIENT PROTECTION

This discouraged the people involved in the healing process. In October 2017, everyone decided it was time to seek the services of a medical doctor specialising in mental health.

“The best profile was Prof Charles Newton, one of the top researchers on mental health. We explained what we were doing in Malindi and he got interested in the story,” said Simone.

A psychiatrist diagnosed Changawa with chronic hebephrenic schizophrenia and prescribed a treatment that would mitigate the symptoms.

The therapy, based on a pharmacy approach, started in February 2018. Changawa struggled with severe side effects caused by pills, especially in the initial phase of the treatment.

“In addition, the cost of the tablets which could only be bought in the town, 70 kilometres away, was unsustainable due to the family’s limited financial resources. Due to these circumstances, the therapy was interrupted and resumed few times, which contravened the indications of the doctors,” said Simone.

The treatment is still ongoing — the dosage was adjusted and a nurse from a nearby hospital helps Changawa get the medication.

“Sometimes he improves. Other times he goes back to the same conditions because when a person lives with schizophrenia for more than two decades, it becomes chronic then there is not much you can do,” Simone said.

AWARENESS DRIVE

He said relatives resort to chaining their loved ones sometimes for years on end to protect them. In remote areas where psychiatry is virtually unknown, the chain is often a last resort for desperate families who cannot control a loved one in the grip of chronic schizophrenia.

“These chains are a way to protect the patient and the family because he may become violent or go missing. You will find out during the story that there is no happy ending. There is no easy solution. It is not about accusing the family of disrespecting human rights. It is just the reality,” Simone said.

“The good thing is that through his story, we have been able to raise many questions,” he added.

Changawa’s story morphed into a project proposal that got an award grant from the Wellcome Trust Foundation Public Engagement Fund, a global charitable foundation.

Mary Bitta, a mental health researcher at Kenya Medical Research Institute (Kemri)-Wellcome Trust said the project is a mental health awareness campaign being conducted in Kilifi County.

“After meeting Simone Grassi, we decided to transform this one story to a project because we realised Changawa is not the only person suffering in the community. There are so many cases,” she said.

The result has been a collaboration between Kemri, the Documentary Institute of Eastern Africa and Madca.

They have been working together to improve knowledge about mental illnesses and reduce stigma towards people with mental illnesses as well as encourage patients to seek healthcare.

The awareness campaign slogan is dubbed Difu Simo, which means breaking free in Giriama. This is done through awareness walks and community screenings with poems, songs and messages about mental health.

STIGMA

Difu Simo also wants to bring the worlds of biomedical treatment and traditional healing in dialogue about a holistic approach to treat and reintegrate people with mental health issues back into the community so they can live healthy lives.

Internationally, mental disorders ranging from something more common like depression to a more complex illness like schizophrenia affect millions of people.

It is a big problem globally, and Kilifi hasn’t been spared. Studies show that the county has recorded increased suicide cases, child behavioural problems and epilepsy.

According to Bitta, 13 per cent of children in Kilifi aged between six and nine have behavioural problems. Other common mental health illnesses include bipolar disorder and psychosis.

One of the major reasons why many patients don’t seek help is stigma and the belief that the conditions are caused by curses and possession by ancestral spirits.

Families also often regard spiritual healing to be more effective than medical interventions. With no psychiatrists in Kilifi, Ms Bitta says most of the mental health patients cannot easily access biomedical treatments.

The coastal region, which has six counties with a population estimate of five million, is served by only one psychiatrist, who is based in Mombasa.

“Even if people come to seek care, there is no specialist and so most of them give up. We have done studies and found that there is also an erratic supply of medication for mental health disorders in the county. People who are seeking care get the drug on and off,” said Ms Bitta.

Patients resort to seeking the services of traditional and faith-based healers, who are more accessible.

“Also, traditional healers will have a whole hour to counsel you and give an explanation for your illness. Everyone likes to be told what their problem is, and this works on what we call your psychic,” she said.

ROLE OF CULTURE

According to Bitta, encouraging collaborations between biomedical and traditional practitioners to enhance care for people with mental illnesses also goes a long way in easing the burden among caregivers.

In various sessions, traditional healers and medical doctors have been brought together to talk about mental illness interventions.

“It was challenging at first but now we get them to talk about the patient and what they think is good for him/her. We try to find the common ground for both sides. They discuss the various interventions suitable for the patients,” she said.

The efforts are already bearing fruit. Traditional healers are now being recognised as a valuable resource in Kilifi County, where both hospitals and psychiatrists are scarce.

Elias Fondo, a clinical officer at a hospital in Kilifi, believes that incorporating cultural beliefs into psychiatric care is important.

He noted that he has allowed some of his patients to also see faith healers. When a patient is taken to him, he will prescribe treatment or counselling.

If the patient has been seeing an imam, pastor or a traditional healer, he asks them to come back together during the next appointment.

He emphasised that they should continue taking their prescribed medication while they continue seeing the healers.

“You treat some of them and then they disappear only to come back in a worse state. I ask them to bring their imam, pastor or healer after which we plan a care routine together. I give them time. I do not contradict or argue with them. I ask them to ensure the patients adhere to medication. The idea is to work as a team,” said Fondo.

COLLABORATIVE APPROACH

The healers also refer patients to healthcare systems. “They will be praying for our patients and also allow us to give them the medication. Yes, we agree you can remain with that belief but bring the patient to the hospital,” Fondo said.

Joseph Karisa Mwarandu, a lawyer and the secretary-general of Madca, said an integration of traditional and modern practices will be beneficial to all.

The organisation works with a large group of traditional healers living in the coastal region. “Vilalu si utsai. (Mental illness is not witchcraft),” he said as we began our interview in Malindi.

He said the society is struggling to care for people with mental illnesses. “We want to create awareness on mental illness. It is treatable. Interventions work best when they are done earlier. There is stigma and that is also what we are fighting,” he said.

He said there is increasing evidence that including the religious and spiritual dimensions to the process of mental assessment and care is extremely positive.

“There was always a conflict between hospitals and traditional healers. The journey has taken more than six years but we are now bringing the two together to combat mental illness,” he said.

TRAINING

Traditional healers have also been taught to identify mental health problems and single out the patients to be referred to psychiatrists.

An interactive version of the film, "Changawa, the Man in Chains", is available on the Difu Simo website.

Before the Covid-19 pandemic struck, they were planning a 50-kilometre walk by biomedics and traditional healers starting from Gede (located on the outskirts of Malindi town) to Karisa Maitha grounds in Kilifi Town.

They planned to walk for more than a week, where they would use songs, poems and film screenings to engage communities on mental health. That has been postponed.

Simone is still filming Changawa’s progress and he expects to complete the film this year for more screenings in other parts of the world.