Living With Disability: Sometimes Great Moments Can Turn Out To Be Humiliating For Us – This Is What You Can Do To Change That

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My girlfriend and I had planned for a romantic evening filled with love and a fair share of lust as well. It was going to be the last time we would see each other in a while. It was one of those moments that are bittersweet. You are excited to see your person but at the same time, you are already conditioning your mind to start missing them. She had run late for some reason and my excitement had quickly turned into uncomfortable anxiety.

“Uko?”, I texted, trying very hard to conceal the fact that my patience was slowing running out.

“Nimeshuka mat, almost kwa gate, ” she replied.

This is not a story about love, neither is it about a night of hot steamy intercourse. What it is, however, is something of much more significance to the lives of people like me; disabled people.

You see, once my girlfriend arrived, my stomach started rumbling like the African drumbeats, my abdominal muscles constricted and the area around my neck started sweating profusely. This is a pattern I knew too well; my body was singing me a song and unfortunately, it wasn’t, “We are the champions”. What it was telling me was, “dude, it’s about to get really weird right now, get your diapers!! CODE BROWN!! CODE BROWN!!”

Yeah, diapers.

I am a C5 – C7 quadriplegic. I suffered a spine injury six years ago after being involved in an accident. As a quadriplegic or “quad” in short, I have no control and sensation in my lower limbs and limited control in my upper limbs. This means that anything beyond my armpits is unresponsive, it is paralyzed. From Stairs To Ramps: The Beginning _ The Accident That Changed My Life

 

Paralysis also affects the way my bowel and bladder work. I experience a condition known as “incontinence” – the inability to control the way I go for long calls and short calls. My bowels and bladder have minds of their own, they do as they please and they refuse to be told what do you.  Some days I pee continuously from morning to evening. Other times its just drops.

Do I go to the loo?

Most of us can’t go to the loo because our bowel and bladder movements are irregular. As such, it can be quite unpredictable to know when to go, not to mention cumbersome since some of us don’t have the ability to transfer our bodies onto the toilets.

What we do instead, is get assistive devices such as diapers, catheters and urine bags. I bet this information might be overwhelming to those who haven’t directly or indirectly encountered incontinence. It is a topic that we are taught not to talk about, well, I have chosen to unlearn those teachings. It’s time to come out and have these seemingly difficult discussions because things aren’t as sweet and rosy as we perceive them to be.

Personally, I spend around Ksh. 4000 a month on these assistive devices. In my case, I need both the diapers and the catheters. I need them daily and there hasn’t been a day in the last six months that I have survived without either of them. Depending on my body’s mood and my diet, I might change diapers 2 – 3 times a day. Unfortunately, I am currently unemployed, so I don’t have a paycheck to look forward to. I do what I can even though the system is hell-bent on emulating my paralysis. Education and employment opportunities for people with disabilities are as thin as the promises our leaders have given on the same.

If you were to ask me to choose between a diaper and a loaf of bread, I wouldn’t miss a beat to pick the diaper. That’s how important these things you distance yourself from are to us. A lot of stigma is associated with diaper users, people shop for them in secret because we were told that they are only meant for children. Therefore, if you are using them, what does that make you? Let’s unlearn that too.

The hardest thing for me is when I work hard to get the 4k, but I can’t get the devices in chemists or supermarkets. Accessing them can be quite a strenuous activity sometimes. There were times I had to make an order all the way from a pharmacy in Nairobi. These are basic needs; we shouldn’t have to cross counties for them.

I think about the PWD, elderly or bedridden brothers and sisters living in remote, impoverished areas. How do they cope? Are they even aware that these devices are available? Even if they are, can they afford them? I live thirty minutes from Nakuru town, and I still struggle to access catheters. I can only imagine the stress they must go through every day.

To truly understand the graveness of this matter, you need to put yourself in the shoes of someone who needs these briefs but cannot access them. I am better placed to apply this kind of empathy because I know how frustrating it can be to find yourself in this position. It is for this reason that I feel a greater need to do something that will hopefully effect some change.

Contrary to the popular belief, most PWDs don’t actually care for each other and they hardly rally behind causes that positively affect our community. Not all of us like each other, which is okay, but we should at least come together to find solutions to the issues we all go through. I have so much love for the community, which is why I have been busy raising awareness about the lack of accessibility to briefs and other devices used by PWDs either because of financial constraints or geographical location.

#ChristmasBriefing is an initiative launched under my foundation to raise donations for diapers to gift needy PWDs this Christmas. It should be a time to make merry and enjoy, I think people with incontinence deserve to enjoy the festivities without the worry of getting bathroom accidents. In the long term, I hope to present a bill that will enable PWDs to receive monthly assistance from medical covers inform of diapers and catheters. To make a donation, you can refer to the information below.

Paybill – 891300

Account – diapers

Anyway,

What was meant to be a night of passion ended up being a combination of more rumblings and diarrhea. It wasn’t that bad; it was made easier by the devices I had in stock. You always have to be well prepared for these eventualities, it comes with the territory.

Maybe next time babe!!

From Stairs To Ramps: Facing Misconceptions About Disability And Intimacy

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