When disability is uninspiring

Kenneth Muluadzi, founder of NGO Changing Disabilities, shares the intimate, unseen parts of disability that make many people feel uncomfortable.

“I have witnessed how sharing the most intimate parts of my story has made some people uncomfortable, especially those features of my disability that aren’t considered ‘inspirational’ – such as bladder and bowel management, dating and sex.

The thought of you waking up and facing the world, no matter what challenges you face, tends to be inspirational. However, no one wants to know that you woke with faecal matter in your bed or that you had a messy day – literally. It isn’t part of people’s inspirational reference. People tend to choose the parts of your story that make them feel better about themselves and their daily challenges.

At times, people stare at you as if you’ve come from another planet – an alien of some kind. Some will distance themselves from you as though you have a contagious disease. Some might make a move on your partner or spouse. Husbands sometimes leave wives, and vice versa. The lucky couples persevere and remain together.

Society is obsessed with inspirational stories. But the moment you stop romanticising people’s ideas of inspiration, people can become awkward and uncomfortable. They might project their fears and anxiety onto you. Sometimes, even the people who face similar challenges might question your motives.

It is important to have genuine and open conversations about everything. This is why I always advise my fellow people with disabilities to live as honestly as they can, which includes telling a potential or current partner that, for example, after a good meal and passionate love-making, they may wake up to a soiled bed – a simple bodily reaction to spicy food for a person with SCI or simply a body trying to put you on the spot again.

Women with SCI might need to have an honest conversation with their partner about things like menstruation, while men might need to frankly discuss erectile dysfunction and the gadgets needed to have sex – for instance, the positions they need to be in and what needs to happen when in the process of love-making.

It might be scary to you, your partner and your family, but it is important to share the gory, uninspiring facts about your unseen challenges too, to allow you to be understood and be better cared for. Remember that if the roles were reversed, you might also struggle to understand or even find the situation a bit creepy, so be patient.”