Schizophrenia Awareness Association (SAA) is a not for profit organisation based in the city of Pune, in Maharashtra State, working since 1997 for persons with mental illness and their families. SAA is run and managed by user survivors, family caregivers and volunteers jointly and is away from proprietary style of functioning. The trustees are elected every three years by the members in the Annual General Meeting. SAA works for and with user survivors and family caregivers. SAA believes in their capacities and encourages them to take responsibility. SAA provides them a forum to share, understand and support. SAA does not receive any grant or funding from any govt. dept. or agency.
SAA’s work is mainly to create awareness and to remove the stigma about schizophrenia and other mental disorders in the community, to promote Self Help Group Activities among persons with mental disorders and their family care givers, to provide day care and rehabilitation facilities to persons with mental disorders and do advocacy work at national and international work. SAA helps in rehabilitation of persons with mental illness, which includes self- employment and also jobs with some sensitised employers. SAA does not promote or advocate any particular line of treatment for mental illness and leaves it to the family and the user to decide what suits them most.
CREATING AWARENESS AND REMOVING STIGMA
SAA promotes awareness about mental illness and works towards removing stigma attached to it. There is huge ignorance in the community about mental illness. As a result when the illness strikes a family member, the family is unaware of what is happening. By the time the seriousness of the condition is realised and the treatment starts, it is late and the aggravations sets in. The illness becomes chronic and recovery becomes difficult.
Over the years, SAA has used all available means to create awareness and understanding in the community about mental disorders in general and schizophrenia in particular. SAA creates awareness by holding public meetings, participating in exhibitions, road shows, street plays, information counters at public places, talks, competitions for college students, film shows, musical and cultural programmes, individual and group counselling, publication of informative books and fiction, publishing articles in newspapers and journals, distributing pamphlets, brochures, production of films etc. Class room awareness programmes are also conducted in SAA's auditorium for caregivers, volunteers, students and other stakeholders.
An essential part of awareness campaign has been fighting the stigma which manifests itself in a lowered opinion about a person with mental disorder regarding person’s capacities, future and incurable nature of disorder. SAA has conducted sensitisation programmes for the press and have held meetings with their groups. The media have also been invited to address the group of caregivers as to how they cover the incidents involving persons with mental disorders. The discussions that follow are educative for the press representatives and also the caregivers.
DAY CARE AND REHABILITATION
SAA runs a day rehabilitation centre at Dhayari, a suburb of Pune, to assist in rehabilitation of persons with mental disorders where several of the complementary treatments are given. ‘Expressive Therapies’– music, painting, clay work, dance, singing and drama are used at the Centre besides yoga, gardening, cooking, embroidery, tailoring, sports, aerobics etc.. The therapist staff and volunteers encourage user survivors to express themselves and to make sense of what they have created in the context of their life experience and state of mind. Drawing and painting programme at the Centre is used as a medium to build self-awareness, to express suppressed emotions and to give vent to anger, frustrations and unfulfilled desires. Art therapy is also used by the SAA staff as a diagnostic tool for clients to come out of the feeling of guilt and shame and as a way to come out with unconscious concerns about their mental illnesses.
Singing and playing instruments is a regular activity at the Centre as music is a healer and stress reliever. Patients suffering from schizophrenia seek comfort in music which subdues the noisy voices they hear. Those in depression are helped by music to lift their mood. Music therapy is therefore used by SAA to help clients under stress or depression or suffering from schizophrenia. Dancing is another popular activity at SAA’ Centre.
Yoga is a daily activity at the Centre. The yoga exercises help user survivors to quieten their mind and put them into a state of calm and stillness. Besides yoga, the clients have outdoor games and jogging as their daily activity. It not only keeps them physically fit but also helps in mood alleviation and emotional balance.
The fee charged at the Centre is modest and subsidised. Sixteen out of Forty persons with mental illness, who come from marginalized sections of the society are given free pickup and drop facility and are required to pay only a nominal fee. The items prepared by patients by way of learning are sold and they get paid monthly for the work done and also the profit earned. Those who have some skills are encouraged to take sessions of others and get paid for it.
The Centre provides a change in environment to the patients and relief to the stressed family members. Patients interact with each other and realise that they are not alone with their illness. At home they remain inactive which only aggravates their symptoms. At the Centre, they are kept so busy in enjoyable activities that the symptoms get suppressed. The families get time to attend to other chores which they are not able to attend to when the patient is at home. The Centre keeps proper files and record for each patient for monitoring their progress. Attending psychiatrists often seek progress reports from the Centre about their patients. The centre also arranges periodic general health check-ups of the patients.
Those who have been attending regularly have shown considerable improvement. As observed by the Centre’s Staff and volunteers and confirmed by caregivers, the symptoms come down substantially and their participation in activities at the Centre and attending to chores at their respective homes goes up. The activities at the Centre help in restoring the confidence level and money earned from the sale of the articles gives them a sense of achievement. They also get equipped for employment/self-employment. There are several success stories; some have found employment with help from SAA; some others have started their own ventures.
SELF HELP FOR USERS
In India the number of persons with mental illness runs into more than hundred millions. The country has only around six thousand psychiatrists, three thousands each clinical psychologists and psychiatric social workers which is much below the international average. As a result a large number of patients are deprived of proper treatment and those who are able to access a mental health professionals, get highly inadequate time during consultation. To meet the situation to some extent, SAA promotes self-help support groups of user survivors and caregivers for experience sharing and learning from each-others' experience.
Participation in such groups by Persons with mental illness provides them with mutual support and valuable learning from each other’s’, experience. Such groups promoted by SAA have participants with mental health disorders with a survivor or a professional or an experienced parent volunteer as facilitator. The groups have a loosely structured format, have no costs for participants and are voluntary. Quite often free transport is arranged for their pickup and drop.
Self Help Support Groups run by SAA provide support and education to the user survivors and are an invaluable resource for their recovery and empowerment. Coping techniques are learnt by them from each other and through practice these become habit. Through recovery techniques and support of peer group, coping skills are strengthened.
SELF HELP FOR FAMILY CAREGIVERS
Trouble shared is trouble halved"? Caregivers’ support groups run by SAA provide a platform to share their troubles with those who are going through the same experiences. They talk about their problems and listen to others talk; they not only get help, but are also able to help others. Most importantly, they realize that they are not alone. The meetings get them out of their homes, provide a change and reduce the feeling of isolation.
The self-help groups of caregivers provide an important platform for exchange of views amongst caregivers who all face lots of problems at home in managing persons with mental illness. They are guided by more experienced caregivers. There is much to learn from the narrations of new caregivers also. The experienced facilitators give their inputs and provide direction to the discussions. Apart from sharing experiences, there is also discussion on topics of common interest, which is identified in advance.
HUMAN RIGHTS, ETHICS AND ADVOCACY
SAA does not promote or propagate any individual professional. It also does not provide a platform for promotion or advocacy of any stream or method of treatment for commercial purpose. Any treatment which is unproven, non-documented or not recognized by an appropriate authority/ agency is discouraged.
In various platforms and in national consultations, SAA has been advocating protection of human rights of persons with mental disorders, provision of adequate medical facilities for them, consulting them and honouring their opinion in regard to their treatment unless they are in need of high support. SAA has also actively contributed in deliberations when Mental Health Care Act and Rights of Persons with Disability Act were being drafted.