Margaret’s journey from ‘monster’ to proud young woman

Stories | December 13, 2021

Disability remains misunderstood among many people and across many parts of the world. This often results in negative attitudes, stigma and discrimination. Such was the case with Margaret, a 21-year-old from South Sudan. After being diagnosed with epilepsy as a teenager, Margaret endured years of abuse and isolation from family members who were scared by her seizures. Even Margaret herself did not understand epilepsy, drawing it as a human face with sharp teeth, like a monster in a children’s tales. This changed when she participated in a CBM supported community awareness activity that helped her understand epilepsy.

In South Sudan, CBM worked with partners on a Community Based Inclusive Development (CBID) project to improve the quality of life of people with disabilities, including children, through the promotion of rights and access to health and rehabilitation services, inclusive education and livelihood opportunities.

Realising that her epilepsy does not make her a ‘monster’, nor give anyone the right to abuse her, Margaret made the decision to leave her violent household and go live with her uncle. Here, she is visited every month by project workers and she is getting medication that is controlling her seizures. 

The future looks bright for Margaret. She is looking forward to enrolling in university and has a loving partner who accepts and understands epilepsy.

“An empowered heart is no longer afraid of the weight of epilepsy. On the contrary, it is able to share it and by sharing it, it builds relations that welcome diversity,” says Margaret.

CBM acknowledges the support of the Australian Government through the Australian NGO Cooperation Program (ANCP)

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