Epilepsy stigma and its prevalence in South Africa
Persons with epilepsy are one of the most stigmatised groups in South Africa with several myths and misconceptions. These include the well-known references to curses and magical spells as causes of epilepsy, but also extend to interesting suggestions for treatment such as pouring water over a person during a seizure or burning selected herbs to cure the person.
As an organisation we believe that awareness and knowledge about the condition are key elements to ensure acceptance and inclusion of persons with epilepsy. While we have several active social media campaigns, we also participate in media interviews and conduct awareness talks and workshops in communities.
Our key calendar event is International Epilepsy Day which is celebrated on the second Monday in February followed in South African by National Epilepsy Week. Other important events include Human Rights Day (24 March), SUDEP Action Day (23 October) and International Day of Persons with Disabilities (3 December).
Our Advocacy Toolkit comprises brochures, posters, video clips and activity material and supports the outreach work of both staff members and self-advocates while our electronic library enables easy access to information about epilepsy.
Access to care and employment for people with epilepsy
Global economic trends have a significant impact on the South African economy as evidenced by less than 2% growth in recent years. The impact is evidenced by increasing unemployment (particularly amongst young people), cutbacks in and redirection of government spending and a significant reduction in funding for social issues. National and international trends impact the opportunities available to persons with and affected by epilepsy and thus access to care and employment.
While Epilepsy South Africa offers limited residential care, we believe in the inclusion of persons with epilepsy in communities, preservation of the family unit and independence. As such, admission to residential facilities is limited to persons requiring a high level of care due to their epilepsy and comorbidities/disabilities, as well as the ability of family members to provide the required levels of care. We thus offer support to families and communities to enable persons with epilepsy to actively participate in their communities. In addition to counselling services we also assist with access to social security and services at local level.
In terms of employment Epilepsy South Africa focuses on placement in the open labour market and protective employment, as well as self-employment and entrepreneurship. However, the stigma surrounding epilepsy can be seen in the unwillingness of many persons with epilepsy to disclose their condition despite employment equity legislation.
However, the high unemployment rate in South Africa (currently estimated at 30%) means that most persons with epilepsy remain unemployed and reliant on limited social security, their families and communities.
The legacy of South Africa’s past continues to plague persons with epilepsy given poor education and skill levels. This means that many people do not have the required skills and experience to effectively engage with market requirements. In response, Epilepsy South Africa established skills development services in partnership with government agencies and the private sector with a view to improving the employability of persons with epilepsy.
Myths about epilepsy
The most common myths and misconceptions about epilepsy include:
- Epilepsy is a sign of spiritual possession, a curse or magical activity. This means that persons with epilepsy may have special powers (e.g. foretelling the future).
- Because epilepsy is contagious contact with anybody who has epilepsy or a family member/friend with epilepsy must be avoided.
- Epilepsy affects intelligence which means that children with epilepsy cannot attend school nor can people with epilepsy learn skills such as driving.
- It is important to put something in the person’s mouth during a seizure to prevent them from swallowing their tongue and dying.
- Seizures are always medical emergencies and you should call an ambulance immediately.
- There is only type of seizure – a convulsion.
- You can stop a seizure by lighting a flame and letting the person inhale the smoke. Other suggestions include pouring a bucket of water over the persons.
- People with epilepsy should be pitied, feared or ignored.
- People with epilepsy are lazy and an employment risk.