When one quickly scans social media platforms especially, Facebook, it is not uncommon to find campaigns for social change. Recently, there was a little woman on a wheelchair who talks about living with dwarfism.
Asher Ajroush Namatovu shares her day-to-day experiences and it is there that she provides a link to her blog; Diary of a wheelchair hijabi, Growing up with dwarfism. Here, she advocates for dwarfism awareness and social inclusion. She tells her stories with a lighthearted tone and humour but drives her point home.
Her experiences range from going to office interviews to social parties. Her advocacy stems from having been born to average height parents but in a family of 14, she and one of her siblings are dwarves. Her personality tickles anyone’s eagerness to meet her. We set out to find out what makes the accountant more passionate about advocacy.
At the porch of her house, flowers in the various pots line up. On scanning keenly, you cannot miss a ramp at the main door of the house in Kyanja, Wakiso District. This is where Namatovu stays.
She emerges in her wheelchair pushed by another woman - who we later learn is Amina Nalubega, her elder sister who is her primary caregiver. Namatovu smiles and one cannot miss her red matte lipstick, flawless makeup and a green veil and floral jacket. As she gets closer, you cannot miss a floral scent.
She sounds like a long lost friend and warns us that she is talkative, “you need to keep the questions coming to keep me on track.” Asked to describe herself, Namatovu says, “I am an interesting and brilliant woman. I am spiritual, educated; caring, loving, friendly and an employer.”
The 36-year-old Muslim works in the finance and administration department of Swift Safaris, a transport company.
Dwarfism is medically defined as an adult person with an average height of below four feet. People with dwarfism are called little people or people of short stature instead of derogatory terms such as pygmy or midget. Namatovu’s dwarfism is associated with brittle bones which have caused her to have recurring fractures that do not heal and she has had about six surgeries. With age, she says her condition has worsened, that a slip, fall, or slight movement could break her bones. Thus, she had to start using a wheelchair 15 years ago.
“I have learnt to move, sit, use the bathroom, and dress up and I use the help of my caregiver to do other things.”
Namatovu believes, society and the media have and still portray people with dwarfism as mythical or funny creatures. The films portray them as elves or munchkins. Sometimes people identify them with the back-up dancers of Pepe Kalle, a Congolese musician who were little people.
“As a child, people called me Pepe Kalle, which bothered me a bit. Usually, people who are different are picked on, abused and discriminated against and bullied, especially in school,” Namatovu adds. She, however, doesn’t recall being so bullied at school which she attributes to her outspoken character. “I am a people person, so people moved towards liking me than abusing me. I was stared at and I still get stared at but I wasn’t bullied.”
As an old girl of Nabisunsa Girl’s School, she fondly talks about her former school.
“I’ve never felt safer or accepted than I felt at Nabisunsa. When I joined, my schoolmates rallied around me and I didn’t feel different.” [laughs at the memory].
Namatovu later studied Bachelor of Science in Quantitative Economics on government scholarship at Makerere University before going back to pursue ACCA, the chartered certified accountant qualification. She is also a member of ICPAU, a professional body for certified public accountants in Uganda.
“When I joined Makerere [University] no one cared. Everyone minded their business and the only challenges I remember were accessing classrooms, bathrooms and enduring the long distances to class. This was made easier by people accepting me.”
Although she has two of her aunts with dwarfism, Namatovu shared a special bond with her paternal aunt largely because they looked the same. Both understood what it meant to be different in a big family and share similar struggles.
“My aunt, now deceased, was outgoing, a sharp dresser and a successful businesswoman with a large personality. She never let anything get in her way and that made her my role model,” she says.
Namatovu is the fourth member of her family born with dwarfism.
Lack of a support system is one of the things persons with disabilities (PWDs) face. However, Namatovu has the support of her family, especially her sister Amina.
“She [Amina] has given up her life… and her sacrifices have allowed me go after my dreams. My family supports me but Amina takes it. We are always together in hospital corridors; for surgeries and post surgeries which have occasionally landed me in the intensive care unit (ICU).
For instance, on July 26, Namatovu posted about her 19 days of near death experience at hospital and was discharged later in 2011.
“Some things have been life-threatening and she has been there constantly. Having her support has allowed me to be Asher and thrive. I can do anything and achieve anything!” she says with gusto.
“A part of me sometimes feels like I’ve robbed her of her life, and it makes me sad [dubbing tissue in the corner of her eye] but another part of me believes that God gave me this person to help me process these complications.”
Being a person with dwarfism and physical disabilities, Namatovu decided to be a self-advocate of dwarfism and later, an advocate for others.
“As a child, I struggled with hard access bathrooms. I would have to keep my bladder full until I returned home. I couldn’t eat or drink,” Namatovu recalls.
The Persons with Disabilities Act, 2006, makes provisions for the elimination of all forms of discriminations against people with disabilities and towards equal opportunities. Also provides for a tax reduction of 15 per cent to private employers who employ 10 or more persons with disabilities either as regular employees, apprentice or learner on a full time basis.
However, there are many other challenges that PWDs face. Capitalising on social media and taking baby steps, she started advocating for inclusion of PWDs in education, employment, physical access, access to financial services such as loans, credit, and companionship. Namatovu takes keen interest in inclusive employment. She says like education, work empowers people.
“There is independence that comes with having your own job or income. Paying your bills or helping others is empowering.
The government has affirmative points for people with disabilities going through school which has helped but after taking people through school, they have nowhere to work. Workplaces are hard to access and that is where my awareness for inclusive employment comes in,” she explains.
Drawing from her experience, Namatovu further states a few buildings have ramps or working elevators and many times, the only option PWDs have is to crawl up the stairs.
“Do you expect someone to crawl to third floor, morning and evening daily in the building where they work? Do you expect someone to come to work five days a week without going to the toilet - because there are hard to access toilets?” she wonders. Even in situations where someone may have skills and can work in one of the arcades in town, manoeuvering through town and later on into the arcades is not enabling. So, the environment makes them more disabled and financially deprived.
“Many times I have walked into interviews and the look I often get is ‘Why is a person in a wheelchair here?’ And since they know that their premises are also not accessible for you, the average height and able-bodied person is at an added advantage because, with you, they might have to spend more money to modify the environment for you,” she says.
Sometimes, she has had to be carried to access the interview room. Such inhibitors in the work environment keep dwarfs and other PwDs reliant on handouts. “Providing ramps in buildings and making toilets accessible to PWDs can make a big difference,” she says.
Two years ago, Namatovu decided to reach out to more little people and PWDs who identify with the same struggles. This, she did mainly through social media and organisations that bring PWDs together. From her Facebook page, she started sharing some facets of her life about what it is like to be a little person, and later a blog where she shares her experiences. She also created Nafe Tusobola page loosely translated ‘We too can’ to showcase different things that PWDs can do.
To take it a notch higher, she joined Professional Fellows Programme on Inclusive Disability Employment (PFP-IDE), a professional fellowship programme run by the US State Department for training how to advocate for inclusive disability employment.
Namatovu also believes that visibility for PWDs is crucial.
“If people see someone like me on TV, presenting a programme, members of parliament with a diversity, if they see celebrities, ministers who are PWDs or little people, it would change the mentality. Worse still, when a parent bears a child with a disability, they exclaim, ‘Tufudde!’ (What a shame!) because society has not made an allowance for them,” she argues. Beyond advocacy, Namatovu volunteers at the Foundation for Persons with Dwarfism. Occasionally, she mobilises funds at the Wheelchair Basketball Federation of Uganda tournaments.