People with epilepsy continue to face high rates of stigma and discrimination, particularly in the workplace, according to Flinders University disability expert Dr Michelle Bellon.
In Dr Bellon’s study of more than 300 Australians with epilepsy, almost 50 per cent of respondents felt they had been treated unfairly in areas of education, employment and community participation as a result of the disorder.
Of those, 47 per cent stated they had been a victim of discrimination, bullying, harassment, exclusion or assault in the workplace due to their epilepsy at some stage in their lives.
“Some respondents reported that they lost their jobs or were demoted without any opportunity to discuss modifications to their work,” Dr Bellon, a course coordinator and lecturer in the Disability and Community Inclusion Unit, said.
“While the Disability Discrimination Act aims to provide protection against such instances of discrimination and unfair treatment for people with disabilities, it is deeply concerning that negative experiences have continued to be so common,” she said.
The study, which used data from the 2010 Australian Epilepsy Longitudinal Survey, also revealed a degree of unfair treatment in educational settings (18 per cent), with examples including schoolyard bullying and exclusion from school camps.
Another 18 per cent of respondents experienced prejudice in the community or social situations, including being denied membership to sports clubs, refused rental properties and not invited to attend social functions.
Discrimination was identified as the most common form of unfair treatment by almost half (47 per cent) of respondents, followed by exclusion (11 per cent), and assault, bullying and teasing (five per cent).
Dr Bellon said the effects of discrimination were far-reaching and could even exacerbate epilepsy.
“Stigma and discrimination can lead to stress and when people with epilepsy have high stress levels they become more susceptible to seizures,” she said.
“This could then cause a flow on effect to other health problems, such as depression and anxiety, which further reduce the level of independence, power and control of people with epilepsy, both in the workplace and the wider community.”
The findings, Dr Bellon said, highlighted the need for more community education and awareness.
“People assume they know what epilepsy is but it’s very individualised so we really need to be promoting epilepsy education a lot better than what we’re currently doing. In addition, people with epilepsy also need further support to develop skills in self-advocacy.
“Access to appropriate support groups and improved awareness of how people can protect themselves in situations of unfair treatment should be prioritised to minimise the harmful effects of sigma and discrimination in the community.”
The “E” word: Epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey has recently been published in the international journal Epilepsy and Behaviour.