“Seven members of my family are mental patients. My one sister killed herself in Valkenberg. In our case, it is definitely genetic. When I think of why this has happened to me, I sometimes hate God. To lose your mind is a living hell. It’s a living hell.” Malcolm’s blue eyes look huge behind his thick lenses as he explains his situation.
“I started getting religious delusions at 13. It’s bad news, living with all the loneliness, the fear, depression and anxiety and the poverty. Girls laugh at me because I’m fat from my medication. I’ve even been told I’m the village idiot.”
Years back, Malcolm ‘ a person with schizophrenia ‘ would have been locked away in a mental institution although he poses no threat to society.
But today both the government and organisations working with people with mental illness believe that hospitals are not the best place for all those suffering mental illness.
In the Western Cape, 696 long-term patients with chronic psychiatric disorders have been discharged, and there are plans to discharge 225 others, according to the SA Health Review.
While these have been motivated by budget cuts rather than policy changes, the Mental Health Bill, expected to be passed by Parliament later this year, indicates a shift away from a hospital-based to community-based care.
Although Malcolm describes his life as “one big snore” ‘ thanks to depression and medication — he definitely prefers life on the outside to being locked away in Valkenberg Hospital.
But “outside” life poses many challenges for people with mentally illness. Many survive solely on their R520 monthly disability grant. They have no community to care for them and, left alone, may become isolated, depressed and fail to take their medication.
When Britain and the US “deinstitutionalised” former mental patients, many ended up living on the streets. And a 1999 study of 425 patients at psychiatric hospitals in the Eastern Cape and KwaZulu-Natal found that only a third of patients were both independent enough to be discharged and had a suitable place to go.
In Cape Town, discharged patients are fortunate enough to have a safety net in the form of a number of rehabilitation-oriented social groups being run by the Cape Mental Health Society (CMHS).
Nelleke Keet co-ordinates 13 social groups that offer support to about 250 people living with mental illness (as distinct from intellectual disability), most of whom are referred to the society on discharge from a psychiatric hospital.
Describing those she works with as “consumers” ‘ “the patient idea ends at the hospital door” ‘ Keet firmly believes that mentally ill people can have a far better quality of life outside an institution.
“We say the hospital deals with the sick side. We help consumers to deal with the rest of their lives,” says the dynamic Keet, who has been working with support groups for the past eight years.
“Our groups work well because everyone is in the same position. They sit there all isolated ‘ some shivering, some with facial tics or obese from the medication.”
The groups help to prevent relapses, says Keet, as members and the social workers can visit those who don’t show up and pick up early warning signs. “There’s one young man I see who starts swearing when he isn’t taking his medication,” she explains.
Peter, who suffers schizophrenia, has been part of a social group for the past 10 years, says it’s “really cool” to be at home rather than in hospital.
“When someone says to me ‘you’re not looking well’, I immediately feel I must defend my sanity. I start to panic in case someone’s going to sign me away,” says Peter.
Different groups have different needs. “In some groups, members have been in institutions for 20 years, so even saying their names is difficult,” says Keet.
Gugulethu’s social club does a lot of education about mental illness ‘ often because members have not had a Xhosa speaker to explain their problems to them.
“I like the group because I am treated as a normal person. Some people laugh at us and call us names, but what we suffer is no laughing matter,” says 27-year-old Beatrice, a Gugulethu group member.
Keet says most social club members want a job but, given the high rate of unemployment and the stigma surrounding mental illness, few succeed. However, the CMHS has set up a project at Fountain House in Observatory, which helps those who are ready to prepare for the working world.
Fountain House ‘ the only project of its kind in South Africa — draws its members from the CMHS social groups as well as referrals from psychiatrists. Members have to join one of the three units — clerical, catering or development ‘ and work internally.
They are then monitored by staff to see if they are ready for transitional employment ‘ based on things such as time management, dress and communication skills.
Those who are ready get placed on six-month employment contracts with one of four companies that support Fountain House ‘ Old Mutual, Pick ‘n Pay, Baygen and Foshini. “Most of the people we place suffer from schizophrenics or bipolar disorders,” says house co-ordinator Retha Taljaard. “The transitional employment helps them to regain the confidence they lost when they became ill.”
Tobie le Roux, who co-ordinates the job placements, says people usually work half-days and are paid directly by the company involved. If there are problems, they usually revolve around lateness, tiredness or dizziness, says Le Roux.
“If a person has been in a hospital for a while, they may be used to people thinking for them. Now they have to get up early, arrange how to get to work and learn how to be part of the company. It can be difficult.”
Much of the work is menial which doesn’t suit some members. Le Roux is trying to get other companies to buy into the scheme by using the Employment Equity Act, which stipulates that companies need to employ a quota of disabled people.
But the stigma surrounding mental illness is great, and many managers are unsure. As Keet says, society “needs to understand that people with the mentally illnesses have a chemical imbalance in their brains that can usually be controlled by medication”. ‘ Health-e.