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.