Portraits » Nadia and Ruma

Born in Saskatchewan, Nadia is a 27 year-old young woman of Bangladeshi background with a developmental disability. Nadia’s father, a B. Sc. From Bangladesh, was sponsored to Canada by her uncle. He married traditionally from back home and sponsored Ruma to join him in Saskatchewan. He is a typical South Asian man who loves his daughter. Ruma, as the mother, is her primary caregiver and her father is there to support when needed.

Nadia lives at home, in a two-story condominium, with both parents. She has an older sister who is married and a younger sister living on a local university campus. Her family moved to the Toronto area in 1998. Nadia attends a part-time day program and spends the rest of her time at home with Ruma. Ruma is a dedicated mother in her late 40s who has never worked since Nadia was born. Ruma has not left Nadia alone overnight with the exception of the birth of her youngest daughter when she left Nadia at home with her father during her two-day hospital stay.

Ruma recalls that Nadia was born “normal” and showed no signs of a disability for the first four months. She believes that immunization resulted in seizures that impacted Nadia’s development after that point. The seizures are small, but uncontrollable. Nadia does not speak. Although she does not have any physical disabilities, Nadia gets tired easily and uses a wheelchair for long distances. This makes life easier for Ruma because Nadia will not wander off anywhere. Nadia expresses anger and frustration, which discourages Ruma from socializing with others from her community. She is uncomfortable and embarrassed when people look. When Nadia does not want to do something and she is frustrated, she will pull Ruma’s hair and put up a fight. She is very stubborn. 

Ruma is involved with a family group that advocates for services for their children. She is informed about programs and services and attends agency seminars. However, there are no written plans in place for Nadia’s care. Ruma wishes that Nadia dies before she is unable to care for her because she believes no one else will love and nurture Nadia like she does as her mother. Ruma expects Nadia’s sisters to be involved in her life.

However, she does not want them to sacrifice their lives, like she did, to care for Nadia because they are professionals pursuing their career goals.

Her greatest fear is that Nadia maybe abused in a mainstream residential setting because she has heard of very scary incidents there. She hopes that the Muslim community establishes something operated with Islamic values.

Although this is not a guaranty that she will not be abused, Ruma would be reassured if the residence were run by Muslims.

 


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