It is said that if you want to find your purpose in life, start with a “Why?” and Stella Bilha Njoki’s “Why?” is very clear.
“I’m driven by the need to give voice to other children like me who are less fortunate. It saddens me when I see the dreams of children with disabilities killed or when cartels use them to beg in the streets,” says the 17-year-old Form Three student at Joytown Special School in Thika.
“I want people to realise that children with cerebral palsy (CP) are able and gifted as well,” she adds.
The challenges Stella has undergone as a child with a disability have served as fuel for her advocacy work.
“I started advocating in 2019 at the International Conference on Population and Development (ICPD 25) Nairobi Summit through the African Women’s Development and Communication Network (Femnet), an organisation I was connected with by my history teacher. Before that, I was doing advocacy on my own, however, talking to my peers, with a focus on self-acceptance and self-reliance.”
Salome Gathoni Kiruthu, Stella’s mother, who has been a part of her advocacy and continues to support her only child’s efforts, believes it is important to recognise people with disabilities as able members of society and not discriminate against them as it degrades their sense of self-worth.
“A lot of young girls with disabilities are at risk of sexual abuse as they have never received any acknowledgement, and therefore become easy targets for sexual exploitation. Fement empowers them on issues of self-efficacy and sexual rights,” says Salome.
Femnet, which has been in existence for the last 33 years, is a convener, organiser and facilitator of dialogues around critical issues on women’s rights. It provides a platform for amplification of the needs and aspirations of African women and girls and key policy dialogues and outcomes both at the national and international level.
That was what informed Stella’s campaign in 2020 while speaking on the International Day of The Girl Child, on the topic: Dreams and Aspirations of Girls and Young Women Living with Disabilities. Her focus was on increased costs in terms of transportation for people living with disabilities and the dehumanising of children.
“Some parents were using their children over the period when schools were closed to beg on the streets. I wanted to highlight this issue and make sure the necessary measures were taken to make sure the rights of these children were protected,” Stella notes.
Stella Bilha Njoki (left) with her mum Salome during the interview at their home on November 20, 2021.
Photo credit: Francis Nderitu | Nation Media Group
“At the age of eleven, Stella gave up therapy because she had been in it for so long, but she had never been able to walk. I remember telling her that therapy was like brushing her teeth – just because they weren’t getting any whiter with every brush did not mean she should stop.”
“I had to let her do some things on her own, which may seem normal to most but which are not for her. Things like brushing her teeth, changing her clothes, using the toilet, taking a bath or making her bed. It takes her a long time and is tedious, but I had to let her do those things herself, as painful as it is.”
“There is no special world for people with disabilities, and even facilities made for them are limited. They have to compete with everyone else. For instance, I have really fought to get her into the normal school system. For her to get into Class One, I had to go to over five schools.”
When Stella was in Class Seven, she got kicked out of school because the administration said they wanted “super marks”, and she could not guarantee that, and the unfortunate thing is that it was a church-run school. Salome says she had to be strong as a parent to show her how to persevere, even when there was no hope.
“I have also faced a fair share of stigmatisation on my own because of bearing a child with a disability. In my ethnic community, people use the demeaning word kirimu, which means retard to refer to children with CP, and keep pointing fingers at me, saying huyu ni yule mama (this is the woman). They take disability as a curse.”
“A colleague at work once asked me if I am such an expert, could I not have aborted my child so that I did not have a child with a disability? Another moment that stood out was when Stella was admitted to hospital for three months. I never got leave, even for a single day, to take care of her, and I had to spend all my nights after work in a hospital. My boss then told me that ‘this job is not about your daughter.”
Says Stella: “Social stigma is unfortunately very prevalent in our society. Many scenarios come to mind when I think about it, but some stand out for me. There is a school I once wanted to join very passionately, and I kept nagging my mum to take me there. The head teacher gave me a test to do, and after I finished, he told me to wait outside. After a while, my mum came out with a letter and told me that unfortunately I could not be admitted. I later learned that the letter was a written recommendation for a school for mentally disabled children.”
But this was not an isolated incident, Stella notes.
One time while coming from church, her mother let her walk unsupported. One of the congregants stopped them to enquire if she was mentally disabled. On another occasion, while walking to the salon with her mother, a man stopped them from offering her money because he thought she was a beggar just because she walked with a gait.
“Discrimination exists even amongst people with disabilities because we all have varying conditions. We call each other demeaning names, and my mum is especially irked by it, but sometimes learning to take it lightly helps. I do not believe that it is right, but the good out of it is that it helps someone develop thick skin and resilience.”
This stigma, Stella acknowledges, affected her self-confidence and demoralised her psychologically. She counts herself lucky that she had a supportive mother who enrolled her for psychological counselling, besides physical therapy. Unfortunately, not all children have such support systems, which is why advocacy is essential, Stella submits.
Stella Bilha Njoki (right) with her mum Salome during the interview at their home on November 20, 2021.
Photo credit: Francis Nderitu | Nation Media Group
Salome notes that stakeholders need to develop better policies to enhance learning for children with disabilities. She says there are existent measures like highly subsidised fees, alternate B mathematics and general science. They also get an extra thirty minutes when it comes to examination timing.
“There is a need to do better, even in terms of integrating children with special needs in the normal education system. Raising them together with other children helps them understand that even though they might be physically limited, they are still capable.”
“There are parents who will tell you they are not able to take their children with disabilities to school because they have to pay for their other children who do not have disabilities.”
This sort of discrimination needs to stop, Salome insists, as one cannot change the societal view if they have not dealt with biases even at the most basic unit, which is the family.”
Becoming an activist by raising one
By supporting Stella through her activism, Salome notes that she has undeniably become an activist on her own.
“I wrote letters to the Ministry of Education through the Joytown school administration at the beginning of last year to get them to allow children with disabilities to use transcribing software in their examinations.”
She notes that even though she has not had any positive feedback on the same, she is hopeful and will keep putting more effort towards achieving this goal.
Salome also advocates for support groups for parents and caregivers of children with disabilities. She says she is best suited to understand how taxing it can be to be in such a position and empathises with parents who have children with worse conditions than Stella’s.
“I know parents with children who have severe disabilities like muscular dystrophy and have a very short life expectancy. Knowing that your child might die after a certain age is not easy as a parent, and if the parent gives up, they might affect the child as well.”
“I believe that the work I am doing helps another child somewhere. Some of them see me as a role model, and I hope to get as many children with disabilities as possible, to live normal, decent lives where they receive proper care, and their rights are not abused.”
In the next phase of her advocacy, Stella wants to interact physically more with people with disabilities and their families. She hopes to visit their places of residence and other schools, with the hope of showing them and making them believe that it is upon them to choose the kind of lives they get to live, despite their physical limitations.
Stella hopes to get society to understand that disability does not make a person a lesser being or any less gifted and that there is a place for everyone in life. She submits that society needs to change how they view children and people with disabilities in general and shun away from discriminating and stigmatising them.
“Most importantly, parents to children with disabilities need to learn to let go and let their children become their beings.
They need to understand they have dreams and a future too, and realise that with the proper support, they can be able to achieve these aspirations and be great people in society.”
