18 year old Grace

Grace Nezandoi from Mucheke village in Bikita is no ordinary eighteen year-old girl. She was born third in a family of five. Her two elder brothers aged 20 and 22 alternately change her underwear and sanitary wear even when she is menstruating. They do everything from bathing her to washing soiled underwear and blankets.

Grace has advanced mental retardation, cannot talk, moves with the aid of a wheelchair and has never seen the door of a school. What is devastating about her situation is, her two younger siblings aged 15 and 5 are also in a similar mental and physical predicament. Her parents both live but are hardly ever there. Her father is a soldier while her mother joined the rest of the bandwagon of Zimbabweans trying to make ends meet in South Africa.

Although the Nezandoi family is regularly visited and assisted by a voluntary care-giver, the three disabled siblings need more attention than what they are currently getting. However, Grace is the most affected. According to the care-giver escorting us on this assignment, it is in the best interest of Grace for her uterus to be removed so that she stops menstruating. Grace’s mother has strongly objected to the idea.

According to the Zimbabwean law, 18 is the legal age of majority and Grace should be in a position to make certain bodily decisions for herself. However, because of her multiple disabilities – her guardians are mandated by law to make any such decisions on her behalf.

The fact that her able-bodied brothers have to physically handle her sanitary issues must not only be devastating and traumatizing for them; it also means Grace is potentially exposed to abuse and has to endure the indignity of having her soiled underwear handled by men. It also emerged that Grace shares her bed with her 15-year-old disabled brother.

I had the privilege of meeting Grace’s unique family on a recent UNICEF sponsored initiative for journalists and other media professionals. I tagged along with the group of journalists assigned to finding new humanitarian angles to living with disability. As the scribes struggled to ask questions and clicked away on their cameras, Grace silently sat in a corner with a blank stare; grinning often and completely oblivious to what was taking place.

I interviewed 20 year-old Duet, the forlorn second eldest brother. The eldest seemed pretty annoyed at our presence and clearly did not want to talk. I could only imagine what this was doing to them, the stigma surrounding having three disabled siblings, relatives that distance themselves and girlfriends that bolt the moment they know about this family, fearing tainted genes.

Duet is a student at the Midlands State of University and has had to miss some of his lectures in order to take care of his three disabled siblings. He appears to have accepted his situation, but only God knows what goes on deep inside him. He voiced that his biggest wish is for his three siblings to be able to attend Chiratidzo – a nearby school for the disabled. He felt that it was important for them to mingle with other children in a similar state so that they feel they are not alone. However, the biggest challenge is transport, apart from the fact that the family will not be in a position to afford school fees.

In a country once referred to as “one of the most disability-accessible countries in Africa”, with supposedly greater availability of friendly disability legislation, free public transport and eligibility for government disability allowance – one tends to wonder what hope exists for a family such as Grace’s as systems continue to deteriorate in Zimbabwe. The country’s social welfare department is probably at its most impoverished and demoralised at this stage as it can hardly afford to offer any assistance to disabled and disadvantaged children. In the not so long ago past, the ministry has paid out monthly pittance per disabled child. Now, even that has not been forthcoming, and in the face of this – local minibus services are unwilling to take the time and trouble to load up children in wheelchairs.

While the constitutional outreach programme is underway, these are some of the issues that need serious attention. Children in these circumstances are scattered all over the country; a number of them hidden from society while many will never have a shot at normal life because of prohibitive socio – economic and policy factors.

For the Nezondoi family, some local NGOs have given aid in the form of food, wheel chairs and other non-food items. However, the care giver expressed disappointment in the fact that the aid has been piecemeal while the situation calls for more sustained assistance.

Back at the workshop venue, I listened to journalists debating the ethical considerations encountered in covering this unusual story. One colleague from a popular local tabloid thought there was a much bigger story and sought to explore the bizarreness of three children all born with multiple disabilities in a family where their older siblings are ‘normal’. Another colleague thought it would be interesting to investigate how this might be affecting the social lives of the brothers.

Personally, I was numbed by my inability to do anything that would make a difference in this family’s life. Most of all, I found myself battling over and over in my head, what I would do if I ever found myself in such a situation? Would stopping Grace from menstruating be tantamount to denying her her rights? Was it correct to assume that she would someday live a normal life? That one day someone will love her and want to marry her? Would she ever have her own children and be able to fend for them?

In the end we were all just journalists. Intrigued by the unusual and wanting to be the first to tell it. However, I always value such encounters, because they serve as another opportunity to remind me to be thankful each day for who I am and what I have as well as appreciate the little things we take for granted.

This entry was posted on July 27th, 2010 at 10:14 am by Natasha Msonza and is filed under Reflections, Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.