Allow me to invite you into a world that you probably don’t know exists. If indeed you have heard of it, it has been through whispers or sugar-coated language. This is an exclusive world, best known for its nature to stigmatise and exclude all that subscribe to it. It is a club with an endless line of unwilling members. This is not the kind of membership that you desire, but rather it is forced onto you.
Adult diapers evoke different feelings depending on whose opinion is being sought after. There are those who cannot even get themselves to say the word out loud. To them, diapers aren’t something that is worth talking about. Then there are people like me, whose lives have been rocked by disability and other unique challenges. We have a different story to tell. One that starts and ends with the uncompromising need for diapers. To me and the millions of people in the world that experience incontinence, a diaper is a need that supersedes all other needs, even food.
“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you from doing well and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.- Stephen Hawking
According to the 2019 census, 2.2% (0.9 million) of Kenyans live with some form of disability. These disabilities range from mobility, cognition, self-care and communication.
Disabilities such as spinal cord injury, cerebral palsy and autism may cause incontinence, which is the inability of an individual to control their bowels or bladder, thus requiring diapers as assistive devices.
Most disabled people are unemployed and live below the poverty line. They manage to make a living through small businesses or kind gestures from well-wishers. With the Covid-19 pandemic crippling the economy, it has become harder for disabled people to access diapers and other essential services which require money.
In order to provide a better perspective of just how important diapers are to the people who need them, I interviewed two people with disabilities and one caregiver.
I met Abel Kirwa late last year in Nakuru. Prior to our meeting, we had interacted on various online platforms. Brought together by our disabilities, we shared experiences and delved into the serious issues that affect our community. Abel is a 24-year- old student at Kenyatta University. At the age of 18 years, he was diagnosed with Kyphosis (an abnormally curved spine) and osteoporosis, a condition in which bones become weak and brittle.
Shortly after the diagnosis, one of his legs was amputated. Abel has no sensation below his navel, which means that he also has no control over his bladder or bowels. He lives in Nandi County with his family. His father, a primary school teacher, serves as his primary caregiver. Abel needs adult diapers to live a dignified life, but often experiences challenges in accessing them.
The stigma of using diapers.
“The first stigma I face every day is the kind that is self-inflicted. I am very apprehensive about using diapers because I am self-conscious about how society would perceive me if they knew the intricacies of my world. The few times I go out in public, I am constantly worrying about my diaper leaking. A bathroom accident is the most terrible thing that can happen to someone like me. People who use diapers are often viewed harshly because they are thought to be “unclean,” confesses Abel.
I too shared Abel’s initial reservations towards using a diaper. Most of the conflict that I had to deal with, existed from within. In addition to shaming myself for being the kind of person that needed a diaper to function, I was also aware of the fact that I would at one-point experience some kind of judgement, discrimination and insensitive remarks.
“I cannot imagine a life without diapers. It would be like psychological torture on my side. I think about all the people who can’t afford them and my heart sinks. If was in that position I would definitely fall into depression. Having access to diapers gives dignity to a person, enabling them to live a life that is not marred by worry or anxiety”, explains Abel.
When asked about how being a diaper user affects his social habits, Abel paints a picture of necessary solitude. He says that because he is so self-conscious about himself, it is always difficult for him to fully open up to someone about the sensitive subject of using diapers. “I think it would be very hard to find someone who fully accepts you with the knowledge that you experience incontinence,” Abel adds as he concludes.
The cost of procurement and logistics.
As an unemployed student, Abel relies on his father for financial support. Every month he needs Ksh. 6,000 worth of diapers. The standard cost for a packet of ten diapers is around Ksh. 900. Abel says that he has to travel across town to buy diapers in a specific shop, and sometimes he finds them out of stock.
“Though diapers are expensive and sometimes difficult to access especially here in Nandi, I can’t think of how my life would be without them. They give me the confidence to go out in public knowing that I can socialize freely without the fear of having a bathroom accident,” says Abel.
For many disabled people in our society, the issue of logistics always causes a challenge. In most cases, the disabled people themselves are not in a position to travel to the shop to purchase the diapers due to the mobility challenges brought about by their disabilities. This means that they rely on other people to help them shop. Abel adds that should the diapers be offered in the local shops; he would easily go and buy them himself.
“Though schools are closed because of Covid-19, my father still receives his salary. But tough times have forced us to forego certain things to make sure we can still afford diapers because that is a basic need for me,” laments Abel.
“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” Martina Navratilova
Sally Thuo is a 26-year-old vibrant woman from Kiambu County. She enjoys watching movies, travelling and cooking. She was a student pursuing a career in Human Resource Management when a car accident in 2015 crashed her spine and dreams.
“The hardest thing about being disabled is how I need assistance to do things that I could easily do for myself before the accident,” says Sally, adding that she owes everything to her amazing support system at home.
Challenges caused by the Covid-19 Pandemic
Disabled people, like everyone else, have been hit hard by the effects of the deadly coronavirus. A large number of people with disabilities are classified amongst the population that is at high risk of succumbing to the coronavirus due to the immunodeficiency issues likely to be caused by their various disabilities. Besides health factors, movement restrictions and curfews have directly or indirectly affected small businesses, threatening the livelihoods of disabled people all over the country.
Unable to go back to school because of her condition, Sally tried her hand in business, but tough times caused by COVID 19 have made things difficult.
“With no stable means of income, I could not afford to buy diapers for myself,” says Sally, noting that she is struggling to make ends meet.
Diapers over everything
Sally says that the importance of diapers to anyone that experiences incontinence cannot be understated. She says that many people are not in a position to access diapers for themselves because of how expensive they are.
“Diapers are so expensive, my mum and I could not afford them. I am blessed to receive assistance from my family. I would rather not have food but have diapers instead!”
As I carried out the research for this piece, I spoke to various disabled people. To all that I interacted with, I asked, “How important are diapers to you?” The answers to this question all painted a picture of an urgent need. A need more dire than anything else. A mother expressed to me that diapers are a basic need to her ten-year-old daughter, “as basic as the air she breathes and the clothes on her back.”
A caregiver’s perspective
Hilda Wanja says that although being a wife and caregiver to her husband can be challenging, it is also a highly rewarding experience.
“Sometimes having a physically challenged husband, two children and house to look after can be overwhelming, but I have learnt to find a balance over the years.”
Hilda’s husband suffered a C6-C7 Spine injury ten years ago. Though her husband is still on a wheelchair, she says that he has regained some functions and has improved immensely.
“He needs diapers because he has no control over his bowels.”
Hilda and her husband experience various challenges while using adult diapers such as the stigma and the high prices of adult diapers. Though the restrictions enforced because of Covid-19 have not greatly affected her husband’s work, she still worries about his immunodeficiency when he goes out.
“Disability is a club that anyone has the potential to join!”
All the people that I interviewed for this article are directly or indirectly affected by a unique form of disability. Only one of my interviewees has had his condition since birth. The rest acquired disability later in life. I too, got disabled when I was 20 years old. The fact is that, everyday people are finding themselves in situations that they couldn’t have predicted. There are many factors that can lead one to using diapers like accidents, cancer, strokes, kidney ailments, mental issues or any other condition that threatens normal functioning of the body including COVID 19 so this conversation about access to diapers comes at the right time.
Diapers are so much more than what they appear to be. They give us a freedom and confidence that is difficult to explain. Through diapers, we can move around freely, engage with people and places we’d have otherwise preferred to avoid. The lack of diapers represents discomfort, disease and depression. This topic should matter to everyone who comes across it because tomorrow it could be you or someone you love who needs diapers to survive.
This article was made possible thanks to a health reporting grant from the Media Council Of Kenya.