Dra Lilia Núñez Orozco, Chair, IBE Regional Executive Committee Latin America, outlines the current situation on employment for people with epilepsy.
Work is a remunerated activity that rewards the person undertaking it with a feeling of purpose both for him or herself and for society. Work provides the resources to buy food, to pay for accommodation, for medical care, for education, recreation and other requirements that vary according to an individuals lifestyle. Whether one lives in the industrialised world or in a developing economy, every society has an economic system based on the work of its members who, since an early age, will have received education and training to lead them to a career and a resulting productive life. It is well known that in many countries, especially in developing nations, there is a high rate of unemployment. As a result, many people will find themselves working in a field that differs to that for which they have been trained. Or there may be an inability to find employment due to a disability or illness that results in discrimination by prospective employers. According to a survey carried out in Mexico, up to 25% of people with epilepsy are either unemployed or are working casually. This rate is much higher than in the general population.
Some of the reasons are:
- People with epilepsy do not have to disclose their condition to their employer. So, when a seizure happens at work, they are immediately fired.
- If a person discloses his or her condition at interview, they either do not get a job offer or are offered a position that differs from that for which they are trained.
- Persons with epilepsy who are in employment are not offered positions that carry responsibility and usually are passed over for promotion and can sometimes be forced to retire early.
- In order to find work, people with epilepsy can sometimes accept a position that carries significant risk, both for them and for others e.g. applying for work as a commercial driver (public transport, trucks, machinery, etc).
On the other hand, in other situations, risks can be are overestimated. Work that could easily be performed by people with epilepsy is denied to them, with employers arguing that they cannot be responsible for any damages that might arise due to a seizure. In reality the worst that could happen might be the trauma for a fall.
When a person with epilepsy is not able to find employment, despite being qualified for the job, the result can be a diminishing of self-esteem. Without the means of an income, economic capacity deteriorates and with it the ability to pay for medical insurance (public or private). The result is a worsening of epilepsy symptoms because of the lack of medical attention and medication, with the major negative impact in quality of life.
The Declaration on Human Rights protects the rights of all people, irrespective of race, political affiliation, religious belief or any other condition and includes the rights to education and work. This declaration has been legislatively adopted by all nations, but despite this declaration, persons with epilepsy or other disabilities remain victims of discrimination.
On this issue, the United Nations has proposed a Convention on the Rights of Persons with Disability, signed by representatives of many countries last March. This Convention mentions the following statements about work:
- Participating states recognize that persons with a disability have the right to work in the same conditions as others; they have the right to earn a living through a freely chosen career or to be accepted in an open, inclusive and accessible labour market that is designed for persons with disability.
- Participating states will safeguard and promote the right to work, even for persons that become disabled in work, adopting pertinent measures including the promulgation of laws such as the following:
- Prohibiting discrimination because of a disability in all issues related to work, such as selection, hire and employment, permanence in work, professional promotion and health and safety conditions in the work place;
- Encouraging opportunities and professional promotion of persons with a disability and supporting them in their search for work, during their employment, and in returning to employment;
- Promoting entrepreneurship and self employment, the creation of cooperatives and personal businesses;
- Employing persons with a disability in government offices;
- Promoting employment of persons with disability in the private market through pertinent policies and measures that might include assertiveness training, incentives and other measures.
Despite the legal position, unemployment of adults with epilepsy remains one of the principal problems for which we have made some strategies to try to alleviate the situation: self-employment in small enterprises, offering employment services and helping to identify job opportunities available within companies.
It is vitally important to implement an educational campaign for people with epilepsy to assess the real risks of some jobs, as well as to avoid the exposure to risk for people with epilepsy and the public. If this educative task is directed at young people still in training, they will realise what is open to them in terms of employment and what is not. This will allow them to concentrate on careers that are suitable and which do not carry any risk. In addition, an educational campaign for employers is also necessary in order to improve understanding of epilepsy so that they can provide opportunities to persons who have epilepsy, promote an appropriate environment in the workplace and avoid discrimination and stigmatization for people with epilepsy.