By Sarah Nakasenge
Betty Kwagala, a mother of two, is an advocate of positive people living with a disability. Her story is that of pain, resilience and positivity. Kwagala was born a healthy child; she had no disability. At the age of 11, something unexpected happened. She was returning from school one day and felt sudden, sharp headache and excruciating pain on her legs. She struggled to get home and her parents immediately rushed her to the hospital for medical attention. By then she could no longer stand on her own.
Several tests carried out at did not indicate any sign of polio. After a while, Kwagala says her right leg started losing strength and reduced in shape. She now uses crutches and sometimes wheelchair when she feels fatigued.
Her education
Because of the pain and trauma parents whose children are living with disability go through, Kwagala’s father lost hope and didn’t see any reason for his daughter to continue going to school. He planned to share part of his inheritance with Kwagala as her source of livelihood.
But Kwagala had bigger dreams, she wanted to become a doctor. She stayed out of school for three years and her fate changed when a White priest who visited their home and asked her father why she wasn’t attending school. Her father’s response didn’t satisfy the priest and he offered to pay school fees for Kwagala until she completes her education.
Amidst all the challenges, Kwagala studied and graduated from Makerere University.
Teenage mother
During her senior six vacation, Kwagala conceived and everyone – including some of her family members – were shocked, asking themselves who could have impregnated a ‘lame girl’ like her. “It sounded abnormal for [a person with disability] like me to be loved and impregnated?” she notes, adding: “I remember my dad said that if he gets that man in his hands he’s going to kill him. I thought of committing suicide three times because of how everyone was [treating me and saying hurtful things about me].”
But as they say, the tenth can’t all hate one, meaning you cannot have all enemies on one side; there is always that one person who will love you amidst the hate of many. The “White Priest” who sponsored her education and her maternal aunt stood by her and encouraged her to give birth and later go back to school as the aunt looks after her child.
One thing Kwagala says she will never forget is the first day she stepped in hospital for antenatal care. She had feared to go for antenatal because of what people would say about her.
“When I reached at the hospital, everyone looked at me, people started whispering to each other, asking what could have happened,” she says. She adds that what helped was her aunt whose presence during the hospital visit was great support and encouragement.
When it was her turn to see the nurse, Kwagala narrates that she extended near the nurse’s table and before everyone, the nurse asked who could have impregnated her: “Were you raped?” Kwagala was then led to the examination room where she was required to climb on a bed to be checked. “I got so frightened and my heart was beating at a high speed.”
When she requested to be supported to get onto the bed given her condition, she was not helped. Instead the nurse rudely asked her: “When you were conceiving this pregnancy, were you on the floor or on the bed?”
She didn’t offer any service and instead wrote a note on a form saying this young woman with disability is at risk; she needs referral. Kwagala left the health center crestfallen.
The following day she walked from home to a hospital that is a distance of about 5kms.
Kwagala’s experience led to her advocacy work for Women with disabilities who come for antenatal at health centers.
Under her organization, Positive Women with Disability Uganda (POWODU), Kwagala joined hands with TASO to take services to women with disability in slum areas, streets and the islands.
Since 2004, the TASO together with POWUDU have given sexual reproductive health services to over 13000 people in the urban districts of Wakiso and Kampala.
“People with disabilities face stigma and discrimination in families and communities, lack transport to health facilities and [they encounter] poor attitude of health workers while seeking healthcare,” Kwagala notes.
Her experience as a teenage mother pushed her to go back to school so that she can advocate for the marginalized groups. In 2001, Kwagala completed her education with a doctorate at Makerere University.
She is also a researcher at Makerere University, and has conducted research on the challenges faced by teenage mothers with disabilities in Uganda.
In her research, Kwagala found out that these mothers face a number of challenges in many countries around the world, Uganda inclusive.
She says these challenges are multiple in teenagers with disability and are not experienced by their peers without disabilities. The challenges are physical, social, and economic.
Increased vulnerability to sexual violence has led to many girls and women with disabilities getting unwanted pregnancies. Children with disabilities face numerous challenges, some are raped, including by relatives who take advantage of their vulnerability. This has contributed to the widespread stigma.
Teenage mothers with disabilities are especially exposed to stigma and discrimination, which can make it difficult for them to support themselves and their children. Low self-esteem can have negative consequences for teenage mothers with disabilities, which makes them avoid antenatal services. This can increase the risks associated with pregnancy and childbirth.
These challenges can have a devastating impact on the lives of teenage mothers with disabilities, including isolation, and poor health outcomes for both the mothers and their children.
Physical challenges
Some disabilities can make it difficult for mothers to care for their babies, such as physical impairments that make it difficult to hold a baby or reach their breasts.
Mothers with visual impairments may have difficulty seeing their babies or finding the right position to breastfeed.
Mothers with hearing impairments may have difficulty communicating with their babies or understanding the instructions of healthcare providers.
Social challenges
Mothers with disabilities may face discrimination and stigma from their families, communities, and healthcare providers.
They may be denied access to healthcare services or be given inadequate support.
They may be isolated from other mothers and their babies, which can make it difficult to get the information and support they need.
Economic challenges
Mothers with disabilities are more likely to be poor, which can make it difficult to afford food, clothing, and other necessities for themselves and their babies.
They may also have difficulty finding employment, which can further strain their finances.
Experience of other mothers
Miriam Nalubwama, a mother of two living with a physical disability
She is a market vendor who says she was abandoned by the father of her children because of her physical disability. “Men date us but because of our disability they abandon us and leave us with kids. A number of women take care of their children, pay school fees and when these children have grown up, their fathers come steal our kids from us”.
Florence Nsimbi, a lawyer, who is visually impaired
She says part of the problem is the myth that when you have sex with women with disabilities, you get cured of Aids and perhaps get blessings like getting rich. This, she says, is a common complaint by Women with Albinism.
