Mother’s Day: Celebrating mothers who raise children with severe disabilities

In Rwanda, like in many other countries, certain disabilities such as Cerebral Palsy are regarded by many as shameful and a curse to the family. Most families break apart because of these children and many parents blame themselves or choose to believe that an enemy bewitched their child. In Nyarutarama’s Kangondo 2 village in Kigali, a mother of three gives her account of living with two of her children with disabilities. Diane Mukamulisa had a child of her own when she met the father of the two disabled children. Also in her care was a teenage child, her mother had adopted before she died. “My husband left me after our second child was born with the same disability as my first one. Their heads are very big. I need to take them to the hospital every once in a while to drain fluids from their backs. The boy is nine years of while the girl is five. “I believe that my son would do well if he was allowed in school. He loves to write as I have seen him pick up a pen and try to write. I have been to Gatagara School (of the disabled) and I was told there is not much they could do for me. I was told to wait for some foreign doctors who will be visiting and hopefully they will treat them. I am their sole provider and caretaker. It is very hard for me”, she says. Mukamulisa lives in a two bedroom house that she rents Rwf15,000 a month. She has to beg for sustenance. Her wish is to find a place her children can stay so she finds work. In some of these cases children are hidden or locked up and rarely taken to school or health centres where they can access assistance. Eleven-year-old Gustave Kayumba was born with cerebral palsy. He is mute and cannot walk. From birth, Kayumba was locked up in the house daily while his mother, a former street vendor, went to look fend for him. This meant that where he was placed when she left the house was where he was found in the evening when she got back. Zuki Ngxiki, the co-founder of Events Horizon Ltd, an events management company, agrees that the challenge for the women is that the children solely depend on them and, therefore, they end up on the streets begging because they do not have the time to do something for themselves, while others end up locking their children up in the house to go to work. “Most of the mothers we have talked to are forced to either use their children to beg or the children are locked up in the house while their mothers go to work. For the children that are able to move, they eventually end up on the streets begging. The profoundly disabled children who depend solely on their caretakers usually have to live very miserable lives hidden from view,” she says. For this reason, Events Horizon Ltd has embarked on a social enterprise and is organising a charity event ahead of the International Mother’s Day to support children living with disabilities and create more awareness on the plight of these mothers and their children. Events Horizon Ltd is a company that creates events on national and international celebrations. They relate the events to social responsibility to create awareness around the causes. They first International Women’s Day was marked in 2013. Eva Gara, the co-founder of the company, explains that, so far, they have reached out to corporates and individuals to partner with them and bring whatever respite they could, to the mothers and children in this predicament. “We started off with trying to honor mothers on mother’s day but then we thought of finding different causes and then we thought how, as a mother it is difficult to bring up a child living with severe disabilities especially because their dependence on their mothers is a lifetime, one can say that they are newborns for life. We wanted to honor these mothers because it’s tough for them. It is our belief that every little goes a long way to help,” she says. Ahead of this year’s Mother’s Day on May 13, Events Horizon Ltd is putting together resources to honour some parents from all over Rwanda, who have given their all in supporting these children. The company will host a dinner and a fundraising event at Kigali Marriot Hotel on May 12, where parents and caretakers of the children will give testimonies of what it is like to raise such disabled children. “We are organising a dinner for everyone who wants to honour these mothers, we will have a special table for these mothers and we will honour them by awarding them with hampers. We have visited some of these families and because we couldn’t afford to honour all of them we are limiting them to 20 mothers. After the dinner we hope to continue supporting them, because some can’t afford rent,” Gara says. Supporting special needs school Statistics from the Ministry of Education indicate that in Rwanda, of 458,306 children with disabilities (CWDs), only 5 per cent are enrolled in school. 42.5 per cent of these children are girls. It gets worse when it comes to girls with disabilities (GWDs) who face further unique barriers, especially in accessing quality education. Those especially outside school remain vulnerable to sexual and gender based violence, especially minors. Girls aged between 11-14 and 15-18 comprised 44 per cent and 38 per cent, respectively, of SGBV cases reported in the country. Gara believes that failure to ensure access to education for CWDs will continually contribute to denial of their human rights, reduce their contribution to the country’s economic development and their self-reliance. Itetero School in Busanza, Kicukiro District, was set up in 2015 by two young people who had a heart for CWDs. The school has one class with 19 children aged between 4-16 years. Kayumba was enrolled at this school and he loves to play and dance. He needs daily massage, kinetherapy and daily medication because he has a brain tumor but his mother finds it hard to bring him to the centre to get treatment. Usually the teacher goes to his home where he is often left alone. Besides creating awareness to the plight of the children who are falling between the cracks and not accessing education and health care, Events Horizon Ltd aims to support the school with equipment for the students’ mothers through funding given by the different corporates in Rwanda. “We love that the school has a rehabilitation programme and admits students with different conditions like cerebral palsy, the mute and deaf, Down syndrome yet it has limited resources. They sent away some of the children because they can only accommodate 20 children. That is where we are coming in hoping that we can help create awareness and assist them in any way possible and we are glad that many companies are interested in visiting the school and supporting them,” Ngxiki says. The School of Inclusive and Special Needs Education under University of Rwanda’s College of Education is looking to provide more teachers that can educate the children with special needs. A 2016 study by the Ministry of Education and UNICEF, noted that there was a general perception that children with disabilities (CWDs) lack the abilities required to progress through formal education so no effort is made to send them to school. Many families, especially in village settings, lack knowledge on how to support their CWDs and some quarantine them, others mistreat and isolate them from society. Usually this leads to their mental and physical deterioration, sometimes leading to avoidable mortalities. Despite the efforts and achievements of Education For All (EFA) and the Millennium Development Goals (MDGs), children with disabilities remain one of the main groups that continue to be excluded from education around the world; those who do attend school are more likely to be excluded in the classroom and to drop out (UNESCO 2015). Stories about the women taking care of children with severe disabilities Console Valentine, 43, lives in Kanombe with her five children. Among them is a 9-year-old pair of twins (girl and boy), Lenata Nishimwe (girl) suffers from mental disabilities that limit her from living a normal life. Unlike her brother, Nishimwe was put in intensive care after birth in an effort to save her life after Console’s doctors had to perform an emergency caesarean section. She was in intensive care for three months. Valentine’s family and friends try to provide her with financial support as much as possible but can not meet all the demands that come with taking care of a child with a severe disability. ----- Marie Jose Mukagatare, a 60-year-old mother of six lives in Kicukiro District. Her 12-year-old daughter, Devine Keza is the only one of his siblings who was born with mental disability and a hole on his heart. Keza began showing signs of mental impairment at the age of one. Mukagatare’s husband is supportive, they practice farming to earn a living. However, with unstable finances, it is still a challenge for the family of eight to meet costs of taking care of Keza. ----- Console Mutumwinka, a 60-year-old mother of seven. One of her children is Kelia Uwase, a 14-year-old girl. Uwase was born with mental impairments, showing signs of mental disability immediately after birth. Aside from Uwase, all of Mutumwinka’s other children are out of school, with five living at home. At 65 years, Mutumwinka’s husband’s age can not let him work to sustain the family. Mutumwinka, therefore, takes on internships in an effort to make money. She earns on average Rwf 5,000 a day which is not enough. ----- Annette Mumararungu, 32-years-old, lives in Kanombe with her two children. One of them, 12-year-old Gustave Ngabo, was born with an inability to talk and walk properly. His disability was noticed immediately upon birth. Mumararungu’s first husband, Ngabo, left her due to their son’s disability and does not support the family. Her second husband, however, loves and supports her children. ----- Chantal Marie Uwizeye, 37, adopted Evaliste Rwakanuma, a 15-year-old orphan over two years ago. Rwakanuma was born with HIV and suffers from muscular problems in his right arm. Rwakanuma also suffers from speech and hearing impairment. Uwizeye’s husband does not have a job but tries to support Rwakanuma and the couple’s three other children. Uwizeye uses her insurance to cover treatments for Rwakanuma. Treatments for Rwakanuma include monthly treatments for flu, sinecures and ARVs to be administered twice a day.

Lifestyle

Mother’s Day: Celebrating mothers who raise children with severe disabilities