ALSO READ: Psychosocial implications of Epilepsy
“I just got let go from my job yesterday. They told me that "I didn't look happy". Ya - I guess I wouldn't look happy considering for the last few months I've been so drugged up on different meds while my neuro tries to find the right one for me. I was diagnosed with Epilepsy a month ago. I am 28 years old. I am having a difficult time accepting it. Been under alot of stress. In all honesty, I couldn't function properly. I had asked for disability insurance medical cover but they refused. Instead they let me go. They said, "Well there are no guarantees when you'll be back" etc. etc.Their words were, "You need to get yourself sorted out. Straightened out", and "you've been to school for something outside this field, so maybe that will be better for you". So basically they sugar-coated it, but then tried to make it look like I "went to school for a different field" and that I was leaving anyway? Whatever!
Worst thing is, I cannot sue. I was on a 6 month probationary period and had only been there for 5 months. So - now how do I do this? I wonder what I say to the next job I try to find if they ask what happened? I can't say it was "medical" because then I'll probably have a worse time trying to find a job. Simon Kakawa, was narrating to me his story while very emotional, as we sat in this restaurant in town it was evident that Simon wanted a listening ear to his story and so for more than 20 minutes I was gazing at him as he shared his story.
People with epilepsy are among the most vulnerable in society not only because of the condition itself, but also due to the stigma; this leads to discrimination and limitations in economic, political, social and cultural rights. (IBE, ILAE, WHO, 2012).Therefore both international institutions and countries have had to make special laws to give some extra protection to vulnerable groups.
Universal Declaration of Human Rights
All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood
Article 27 of the Kenyan Constitution, 2010
Every person is equal before the law and has the right to equal protection and equal benefit of the law. People with epilepsy share the same rights and obligations as anyone else. And the most important right may be Article 1 of the Universal Declaration of Human Rights, which states that we are all born free and equal in dignity and rights. This means, for example, that the right to have an opinion counts; for the president of Kenya, as it does for you or any other global citizen.
However, there are groups in society that need some extra attention to have a healthy fulfilling life. These are the groups often miss out on chances to make use of their rights. For instance only ten percent of people with physical challenges go to school as children, and of whom only twenty percent would have a job in some countries (UNESCO, 2012).
According to the Kenyan Constitution, Acts of Parliament and the International Conventions, people with epilepsy belong to various groups with special rights, such as:
Persons with Disabilities
According to the Kenyan Constitution and the Convention on the Rights of Persons with Disabilities, a person is disabled when they are hindered in their common day-to-day activities due to a physical and/or a mental challenge. This means that a person with epilepsy is ‘disabled’ when their seizures hinder their day-to-day activities. However, when the same person with epilepsy takes the treatment which controls the seizures and enables them to undertake day-to-day activities, they are no longer viewed as disabled.
Is Simon disabled?
Simon has epilepsy but doesn’t let this condition stop him from being very active and hardworking. He had a cleaning job at the County offices. With the money he earns, he can pay for his visits to the doctor and the drugs he takes daily. As long as he takes his drugs and eats and drinks well, he is perfectly healthy and fit to work study and socialize.
However, sometimes he forgets to take good care of himself and doesn’t eat or drink enough. This causes dehydration which is a trigger of his seizures. Is Simon disabled? Yes, he is disabled when he forgets to take good care of himself and gets the seizures. It hinders him in undertaking his day-to-day activities of work, study and socialization. But no, he is not disabled when he drinks and eats well while he takes his treatment, because then he is as active, or maybe even more active than any other person without epilepsy.
People who are hindered in their day-to-day activities due to physical challenges have equal rights to people who are not. Like anyone else, they have the right to be treated with dignity and respect and to be addressed and referred to in a manner that is not demeaning.
However, they have some extra rights: they have the right to reasonable access to all places, public transport and information. They especially have the right to access educational institutions and facilities for persons with disabilities that are integrated into society according to the interests of the person. They even have the right to access materials and devices to overcome constraints from their disability. Some people need more assistance than others to achieve this; therefore it’s a very useful right in the Kenyan Constitution.
People with Non-Communicable Diseases
Epilepsy is a non-communicable disease. People with epilepsy can make use of the statements in the Declaration on the Prevention and Control of Non-communicable Diseases (2011). This declaration states that, these conditions are a serious threat to people’s health, and that the Government must respond effectively to their health-care needs. The Kenyan Government needs to create access to efficient programs and health-care interventions. According to the Declaration, the current resources for the treatment and prevention of non-communicable diseases do not address the seriousness of the problem.
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