Discussion with a parent @ Malawi

An interview with Mr. Geoffrey Kamanga of Zomba, Malawi tells it all. Msenga: Welcome Mr. Kamanga! G. K: Thank you, Mr. Mulungu! Msenga: You previously told me that you have a child with disabilities. What is your child’s name and what’s the age? G. K: Yes, very true! He is Geoffrey Kamanga Junior, 11 years old. Msenga: What are some of the daily support that you provide for him on daily basis, that he cannot do on his own? G. K: They are in two forms; in terms of mobility and in terms of holding things. So, there are certain things which he can do on his own and other things that we help him do. But also, in terms of mobility; he crawls when he is a lone or playing. But we carry him when he needs to use the toilet, we lift him on to the bed and off the bed. Msenga: Are there any activities he can do without other people’s support? G. K: Yes, many of them. Msenga: Like what? G.K: He is able to speak…. As I earlier said, I have taught him to handle a spoon or a folk. So, he is able to eat porridge on his own. The challenge is that he cannot cut and make nsima balls. We cut nsima into small pieces so, he can just pick and eat. He also used to urinate into a bottle previously, now he feels old enough to do so. Hence, he crawls to the toilet to pass urine. Msenga: As a father, how do you feel having a child with disability? G. K: It’s difficult to answer, hmm! He is my child like my other children. I have 4 children, all are boys. Msenga: What is his sibling number? G. K: One! He is our first born. So, I feel nothing! Msenga: I have asked you such a question because many fathers do not want to be associated with their children with disabilities. They do not take part in helping to nurture … What can you say? G. K: That is brutality! As I have said, a child with disability is like any other child. A parent should love a child with disability just the same way as those without disabilities because the one with disability, did not choose. It’s we parents that brought him to life. So, as a father I have to take care of him. Let me tell you; may be you have forgotten, Mr. Mulungu, you gave me some literature on Cerebral Palsy. Sometimes I read from the internet. I sometimes gather my children and my wife, teach them how we can support and care for this child with disability. Msenga: What are the attitudes of your neighbours towards your child with disabilities? G. K: It will be difficult to answer because I hear nothing. It starts with us how we treat our child with disabilities. We take him as the first born of our family and we complain nothing about him. For the neighbours to start saying ill about our child, will depend on what we say ourselves. I have heard nothing. Msenga: What about his younger brothers, how do they support him? G. K: Mr. Mulungu, if there is something that I am proud of; it is the love that Geoffrey Junior received from his younger brothers. His brothers are always helping him. So we have the support system in the family such that last week, Zanti, who is one year old, took a bottle to Geoffrey Junior after seeing him wanting to urinate. This encouraged me. But also you know these are children, sometimes they forget that their brother has disabilities and cannot do certain things on his own. So, I sit down with them to remind them why their brother cannot do certain things. Msenga: My last question is on Covid-19. How has Covid-19 affected the livelihood of your child with disabilities? G. K: You know the schools that our children go to; there are more Covid-19 threats. For example, there are preventive measures which I feel my child is not safe. For example, our child with Cerebral Palsy cannot use his hands to put on or remove the face mask, will need someone to help but at a space of one metre. This is not possible. Again, how can someone push him on a wheelchair with one or two metres space of the pusher. My son is at more risk when crawling as he exposes a large part of his leg to the ground unlike those using feet when walking. Hence, we are afraid of sending him to school since reopening. We feel his life is at risk with this pandemic. Msenga: Thank you for accepting to chat with me.

Training and knowledge Material needs to be developed in local languages – A request from Malawi, Africa.

Such reading materials can be important for local communities to understand issues on disabilities if DPOs used them in local langues. Literature can effectively transform the way we think and the way we hold attitudes towards persons with disabilities if only we understand and contextualize what we learn from the wider world. Hence, the need to communicate in local langues.

Here’s the link to the file: https://s.docworkspace.com/d/AA7AxCvgo95B8IrRxqWdFA Shared from WPS Office: https://kso.page.link/wps

https://s.docworkspace.com/d/ANU-YHbgo95BgKWsyaWdFA Shared from WPS Office: https://kso.page.link/wps

Interview with Pamela, a single mother of a child with disability from Lilongwe, Malawi, Africa.

Pamela, (Mother) with 4 year old Irenaeus Chisiza

Msenga: Madam can you introduce yourself?

Pamela: I am Pamela Chipeka and am 29 years old. I am staying in Area 25, Lilongwe.

Msenga: What can you tell me about your child?

Pamela: My child is Irenaeus Chisiza, male and 4 years of age. He was born with Cerebral Palsy (microcephalus) and is also epileptic.

Msenga: When did you realize that Irenaeus had disabilities?

Pamela: I knew about his condition before he was born. I was scammed when I was expectant, and was told that the baby had some challenges. As a result, I got prepared psychologically for the difficulties I was to experience in nurturing the child after birth.

Msenga: Where is the father of your son?

Pamela: Unfortunately, I cannot trace his where about. We parted before Irenaeus was born. However, there is no connection between our separation and his disabilities.

Msenga: How do you feel for being a mother of a child with disabilities who at 4, cannot sit, stand or talk?

Pamela: I have a positive feeling because I was psychologically prepared with that early identification.

Msenga: What are the attitudes of your relatives towards your child? Pamela: All my relatives have accepted my child’s conditions and they are morally supportive.

Msenga: What about your neighbours? What are their attitudes towards your son? Pamela: It is a mixed bag. For sure, some neighbours have negative attitudes. They like discouraging maids that I hire to abandon my child with disabilities. They advise them wrongly. Hence, I keep changing maids. Some landlords do not accept me to occupy their houses as a tenant just because I have a child with disabilities.

Msenga: Now as a parent, what are your challenges for having such a child with disabilities? Pamela: There are many but will mention just a few. For instance, as a young woman, some men who want to propose love, shy away when they realize I have a child with disabilities. Further, I fail to carry out personal distance business errands because I have to be there for my child all the time.

Msenga: What do you hope to see of your child?

Pamela: I still hope to see my boy to sit and stand or even walk a lone. Already, I can see some improvements as he can now respond when I call his name. I would love to see him play with other children in the neighborhood.

Msenga:What advice can you give to other parents of children with similar situation as yours?

Pamela: They should accept the challenges facing their children with disabilities, support them with affection.

Msenga: My last question is on Covid-19. How has the pandemic affected you? Pamela: I lost my good paying job because the employers could not make good business. Again, Covid-19 deterred progress in rehabilitation as centres for physiotherapy closed.

Msenga: Thank you for your time.

Parents travel over 200 Km to access services for their Children with Mobility Challenges.

Parents from the district of Karonga have lamented that for their children with mobility challenges to access services, they have to cover over 200 Kms. One of the parents, Mr. Richard Mzinza, who is father to a seven year boy, Pilirani, with cerebral palsy, explained that he had to sell all the rice that he had harvested in order to find transport money to travel with Pilirani to the nearest service provider in Rumphi district. On the other hand, Kettie Mwawembe had to sell all the chickens that the family had in order for their 19 year old Blessing to access a wheelchair at Malawi Against Physical Disability in Rumphi. She further explained that her son’s disability was impoverishing the family. The two parents also narrated that their wards would still find it difficult to use the wheelchairs in their homes due to the geographical terrains. The areas are very Sandy and in some places, very uneven. Special schools and specialist teachers were also not available in their home schools. Generally, they said that nutrition for children with disabilities as they are very selective to special meals like foods from soya bean and milk. Hence, parents fail to source them. On the distance to the service provider, they were appealing for mobile clinics to cut off transport costs. The physiotherapists should help such children in their homes.

PODCAM counsels a family for locking up a member with disabilities for 30 years.

The news about Estery Chakhumbira, 30 years old lady with severe cerebral palsy was all over in the social media.

Estery lives in Lumbadzi, Traditional Authority Mkukula in Dowa District of Malawi. She lives with her mother who has been a widow since 1991 when her daughter, Estery was a year old. The mother who is about 69 years old, explained that Estery was born prematurely at 6 months, with weak nervous system. She cannot stand not sit. She has to always lie on her back or stomach. Her both legs are very weak from her knees and both hands can hardly hold anything. Hence, Estery relies on someone nearly her for everything. Worse still, she can hardly utter a meaningful word though she can hear. Her mother stopped going with her for physiotherapy at six due to increased weight to be carried on the back, as she became so poor that she could not afford transport fares to the rehabilitation centre some 25 Kms at the Central Hospital. At one point, they got a wheelchair but I found out that they rarely used it till it got lusty and worn out. I advised the mother and Estery’s elder brother that once the wheelchair was fixed, they should make sure Estery uses it outside the house for her change of environment, she should have chance to chat with other people for her socialization and Vitamin D from the sun. I advised the mother that locking up her daughter in the house was a sign that she was feeling ashamed of her daughter’s disabilities. She should learn to accept the condition of her daughter so that the community can also accept her. I promised to followup with them once the wheelchair is brought back. Other individuals and organizations have been following up with the story by visiting the family with different material and moral support. One such an organization is the Female Sex Workers Association whose Executive Director, Zinenani Majawa, carried a variety of items to support the family.

Families of Children with Disabilities are severely hit economically due to Covid: steps taken in Malawi to train parents on making masks.

Speaking with one parent of a youth with disability, Ronnacy Nyirongo of Mzuzu City PODCAM support group, sounded SOS.

Ronnacy says that in the course of the Covid-19 pandemic, families with children with disabilities are severely hit economically. Such that they cannot afford to buy the lucrative face masks for themselves and their wards. In fact she said that even the acquired masks do not last long as the usage is not well understood and cared for by the children with disabilities especially those with Intellectual Disabilities. Hence, she has engaged the parents with trainings in making masks locally that could be reused. She further says that this challenge is also rampant when it comes to teaching parents on how to sew sanitary pads for adolescent girls. Most mothers come from ultra- poor families which can hardly source the materials for this productive local industry. Hence, the appeal for well-wishers. Let us help these destitute mothers.

Poverty deprives children with physical disabilities from accessing aid.

After identifying children with mobility challenges, referrals are made to the service provider. In Malawi, the Malawi Against Physical Disability (MAP), is a government institution with expertise to fix wheelchairs for clients that use or need to use the device. However, most prospective clients, especially children with mobility challenges fail to access the services because their parents do not have transport money to take their wards to the service centre. This situation mostly hinders those living in remote rural areas. As a result, children in this situation cannot access school and other social gatherings. We urge parents to engage in small income generating activities so that at least they can provide for their children with disabilities. They should not allow poverty to make their children with disabilities to be more challenged.