Epilepsy not recognised as disability in Guyana – Epilepsy Foundation

…urges policy review

Epilepsy is not currently classified as a disability in Guyana, a policy gap the Epilepsy Foundation of Guyana said is preventing affected persons from accessing state assistance and exposing them to discrimination in schools and workplaces. The concerns were raised during a recent broadcast of ‘Disability and You’ aired on the National Communications Network (NCN), where Vice Chairperson of the Epilepsy Foundation of Guyana, Deidre Ifill, and Assistant Secretary/Treasurer Pauline Singh discussed the challenges facing persons living with the neurological condition. Addressing the issue of policy recognition, Singh stated plainly: “Epilepsy is not classified as a disability. So, somebody who has the condition cannot benefit from the assistance available to other persons with disability.” According to Singh, this lack of classification has social and economic consequences. “Because of the lack of awareness, some persons who would have had seizures in the past, they were excluded from having an education, which is wrong,” she said. As a result, “they’re unable to get a job and they should have been able to get a job. They should have had an education.” The discussion was part of activities surrounding International Epilepsy Day, observed this year under the theme “The Epilepsy Pledge.” Ifill explained that the initiative encourages concrete commitments rather than broad awareness slogans. “You can make pledges. Now, with the pledges you can make, it’s just a simple pledge of saying, look, I vow to talk about epilepsy more. I vow to help someone who has epilepsy or who’s living with epilepsy a bit more,” Eiffel said.

She noted that Guyana’s advocacy efforts have also been strengthened internationally. “We are now a full chapter on the North American region for the International Bureau of Epilepsy,” Ifill disclosed, adding that this places Guyana “in a position to advocate more for epilepsy and seizures moving forward.”

Stigma remains
However, both representatives stressed that stigma remains deeply entrenched locally. “We still have persons who are fearful of letting others know that they have epilepsy,” Ifill said during the programme. She also called for more respectful language when referring to seizures. “This thing with fits, I really want to stop calling it fits. It’s not good to say fits. It’s degrading. It’s a seizure.” Singh addressed common misconceptions that continue to shape public attitudes. “People think it’s some spiritual aspect, some possession. People think it’s a mental illness. It’s none of that. It’s a neurological medical condition that needs to be treated by a doctor,” she explained. She further warned against dangerous practices often used during seizure episodes. “People say, ‘bring a spoon, bring a fork, put it into the mouth of a person when they’re having a seizure.’ That’s also a myth. It should not be done. That’s a dangerous practice. It can lead to suffocation and further damage to the person.” Workplace discrimination was another major concern highlighted during the broadcast. According to Singh, some individuals conceal their diagnosis out of fear of losing employment. “Some persons, they do not state that they would have had a seizure in the past, simply because of the fear that they will not be hired,” she said. In more severe cases, “there have been cases where persons got a seizure on the job, and they were terminated, simply because of lack of awareness, lack of knowledge.”

Proper medical management
Ifill emphasised that with proper medical management, persons with epilepsy can live full and productive lives. “There’s no cure for epilepsy. But with proper management and support, you can live a normal, normal life,” she stated. Stressing the importance of treatment compliance, she added, “Medication, and I know for a fact, without medication, you cannot manage epilepsy properly.” The foundation representatives also discussed safety considerations, including the risks associated with seizures occurring near water or while driving, noting that medical supervision is key in determining appropriate precautions. Both Ifill and Singh underscored the need for stronger institutional involvement, including education within schools, workplaces and policymaking bodies. “Epilepsy is real, just as any other chronological disease. It’s real. It’s not contagious and we just need to get started talking about it,” Ifill said. The foundation recently conducted awareness sessions at St Stanislaus College, engaging both students and teachers as part of efforts to reduce stigma and improve seizure response knowledge. While the organisation continues to push public education initiatives, it maintains that meaningful progress will require policy reform to ensure persons living with epilepsy are not excluded from state benefits and protections available to other vulnerable groups.