Living with disabilities in the townships

A couple weeks ago Yvonne took me to visit Masincedane Home Care, a home for severely handicapped children. Nancy, the woman who runs the place has a disabled daughter, and opened the center after her mother, who had been the other primary carer for her granddaughter, died. "How many other disabled kids have lost a loved one and have no one to care for them?" she wondered. She checked around the neighborhood and found that there was a great need for a clean and safe facility with experienced carers, and decided to open her own center using her experience caring for her own daughter and working at another facility.

This is one side effect of the prevalence of HIV/AIDS here which I would not have anticipated. Lots of pregnant women are undernourished because of the disease, which weakens their bodies, steals their appetite, and robs them of the drive to take care of themselves. The result on a developing fetus is similar under-nourishment leading to a higer incidence of birth defects. Imagine what happens to AIDS orphans who are severely handicapped? Who takes care of them?

On my visit, there were about eighteen kids from the age of two to about thirteen, all living in two rooms of a small house. It was not a bad space, clean but very cramped, usually with two kids to a crib. Despite efforts to keep the place clean, there was a strong smell from having so many little kids living in one room and sharing the same air. Nancy seems to have been able to get some kind of funding assistance, as the facilities are in good shape; they have a stove, a fridge, and a new looking washing machine; but all the staff are volunteers, and half of the woman's own house is devoted to these children. Most of the children come from parents in the area, but some of them were simply abandoned, or brought here by a social worker although the government provides no funding.



As horrid as it is for a family to abandon their disabled child, in a place like Guguletu you can understand why this happens. It takes a lot of work and a lot of money to raise a severely handicapped child, who will always be dependent on care and never able to work or provide for herself. These children can be a tremendous burden on people who are already struggling to survive. The baby I did the funeral for a few weeks ago had been born with Down's Syndrome, and his grandmother was about to quit her part-time job to stay home and care for him. There is no excuse for abandoning a child, but it shows how deeply there is a need for places to care for these kids.



My friend Jevon had visited a similar place called Golden Girls when he was at JL Zwane (see the Golden Girls post on his blog using the link to the left), which by all accounts was pretty damned awful. Since Jevon was here, Golden Girls closed down for various reasons, including misuse of funds and allegations of abuse. Nancy had pulled her daughter out of Golden Girls because of suspicious bruises on her neck which the staff said were "ant bites". Children there were bitten by rats, and despite donations from JL Zwane the kids weren't even diapered, but were left to leave their filth on the floor! Golden Girls sounds like it was a horrendous, even criminally negligent place, and many of the children pictured came over when Golden Girls was shut down.


My mother works with children just like these back in the States, and I called her the evening after my visit. I was really affected by my visit, on the verge of tears, which has not happened even when I have seen some difficult and terrible things here. Because I have visited my mom at work in the past, and because I worked at a L'Arche community for people with disabilities, seeing these kids in particular moved me deeply, perhaps because I know how easily they are neglected or taken advantage of, and how helpless they are if no one cares for them.


Mom was deeply moved as well when I spoke to her. She had been thinking she wanted to get involved somehow, to donate some money to ministries JL Zwane is doing, but wasn't sure what she wanted to support. My mom's calling is to work with children like this, and she is my example of a person who loves her job and feels deeply that it is just what she is supposed to be doing. She pours her love into her work, and growing up I was always amazed that she would come home from work with a smile on her face even if she had been bitten, kicked, or spit-up, bled, peed, and pooped on.







There are lots of needy children in the townships, however, and at first Mom wasn't sure it was right to focus all of her attention on these particular children, even if they were the ones who really moved her. Afterall, I see kids every week who are in need of the necessities of life and who have no parents to care for them. But I said these were just the right kids to give to because they are the same ones she devotes herself to in the United States. The needs here are bigger than any one person or organization can meet. Every day working here we need to limited ourselves to helping those we can, rather than trying to take on needs that are bigger than what we can manage. We could either feed and clothe thirty kids so that they have a chance to go to school and focus their attention on something other than just merely surviving, or we could give a pair of socks and a piece of bread to three hundred children. As hard as it is to leave 90% to their own devices, it is better to provide adequately for some than inadequately for many. The real need is to find a way to expand operations, to parter with others in the community and in the world to meet bigger needs more effectively. But you have to start with what you can do now, and choosing the few you will help is usually a function of whom you have the greatest personal connection to or investment in. So I encouraged my mom not to feel bad about wanting to help these particular kids. Afterall, people with disabilities are usually one of the last groups in society to be cared for, and unless someone takes an interest they will continue to fall through the cracks in aid distribution.





Mom and I decided to see what we can do to provide assistance to this home for children, in terms of food, nappies, and whatever other tangible needs we can provide for. I was able to work things out with Spiwo, Yvonne, and Edwin so that Mom and I could raise money to be donated to these children which would go through JL Zwane's books. Yvonne and I will visit the home for the fourth time this week, and hopefully have a meeting to work out providing the funds for specific grocery items, and maybe also petrol and some stipends for the volunteer workers. The real need is for a larger facility, but again it is best to start with what we are prepared to commit to.





I am really excited to be putting this plan into action because I haven't gotten to do as many administrative tasks as I had hoped while I've been here. I want to work for an NGO in the future and the business and funding and admin is essential to running a non-profit. So although admin is not my gift, I want to gain greater competence in it, and have been a little disappointed with how few opportunities I have had to build those skills here. It has also been discouraging to know that I wasn't going to make a long-term difference here, even if that is an unreasonable expectation for a ten-week internship. So to take initiative in setting up a funding arrangement that will provide tangible long-term assistance to some of the neediest children in the townships really gives me a sense of accomplishment. Who knows, if it would be useful my mom and I may see about starting our own little non-profit to manage getting funds to these children. So it is my last week here, but I feel like I am getting to do something that is really going to help the people I have met here.