Submission for #WhatWENeed 2023 by Winfred Wanja Kirumia

Campaign Submission by Winfred Wanja

Winfred Wanja Kirumia advocates for the rights and inclusion of persons with disabilities especially young women and girls with disabilities. She trains persons with disabilities to fight for their rights and inclusion, creating awareness of how to address their challenges and how to embrace development activities and deliver themselves from the yokes of poverty including saying no to Female Genital Mutilation (FGM). She is also in the forefront of advocating for the rights and inclusion of women and girls with psychosocial and invisible disabilities. Wanja is epileptic and has experienced double stigma and discrimination due to her gender and disability.

Most people with psychosocial and invisible disabilities in developing countries often reside in places where they lack access to medical access and understanding of the particular disabilities. Information on psychosocial and invisible disabilities are not immediately apparent. People with psychosocial and invisible disabilities are often accused of faking or imagining their disabilities. Epilepsy is often left untreated and stigmatized. Lack of familiarity with the basic signs and symptoms of invisible disability also leads to mistreatment from caregivers and society at large.

Wanja, a young mother of 2 first started having convulsions at the age of five and her relatives confused the convulsions with cerebral malaria. This continued until she was paralyzed and admitted to Embu General Hospital after losing her eyesight and her voice. She underwent various CT scans, but nothing came up. That is when they started alleging that it was happening since her father had not done the required customary practices. Her father went ahead to pay dowry but even then, the convulsions did not stop.

In her own words, Wanja recounts, “My life has been a journey from hell to earth. It all started when I was diagnosed with epilepsy, as many view me as somebody who is epileptic as cursed, bewitched, taboo, and an outcast.”

Reliance on traditional modes of healthcare in Africa has continued to increase the gap between healthcare needs and it widens under the increasing burden of poverty. Recurrent seizures may limit a person’s ability to carry out the manual labor necessary for rural life. Epilepsy causes economic losses. Convulsions involve falling out with jerking of the body and sometimes tongue biting, urination, or defecation.

When humans mostly fail to understand a situation like psychosocial and invisible disabilities, they may often tend to turn to their own spiritual practices, however harmful.

For Wanja, this included being dipped in large holy water tanks to cleanse out the convulsion or her hair being shaved and thrown to a flowing river as they associated her as devil property.