A Disabled Body Living in an Able Bodied World: A Dialogue with Mugabi Byenkya

Mugabi Byenkya is a writer, poet and occasional rapper. He was born in Nigeria, to Ugandan parents and is currently based between Kampala and Toronto.

Mugabi was longlisted for the Babishai Niwe Poetry Award in 2015. His essays, articles and poetry have been featured on The Good Men Project, African Writer, Arts and Africa and The Kalahari Review, amongst other publications. He has been interviewed on Voice of America, NTV Uganda, 91.3 CAPITAL FM and Brittle Paper, amongst other media outlets.

Mugabi’s writing is used to teach international high school English reading comprehension. His debut novel, ‘Dear Philomena,’ was published in 2017 and he recently concluded a 42 city, 4 country North America/East Africa tour in support of this. In 2018, Mugabi was named one of 56 writers who has contributed to his native Uganda’s literary heritage since independence by Writivism.

An advocate for the intersection of arts, chronic illness, social justice, and literacy, Mugabi leads workshops in effective writing, poetry, performance, vulnerability, mental and chronic illness for youth and adults.

Mugabi wants to be Jaden Smith when he grows up.

This dialogue happened between a green bedroom in the sweetspot of Gaborone, Botswana and  a disabled body living in an able-bodied world.

Gaamangwe: First, I must congratulate you on writing and sharing your personal experience in your raw and inspiring novel, Dear Philomena. I am in awe of your strength. You say you wanted to reflect that vulnerability is strength. I do agree with you. I also think those who are vulnerable are heroes as they invite us to do the same.

Now, lets go to the beginning of the writing of your book. What was the inspiration for this total vulnerability that is the archiving of your experience with chronic pain?

Mugabi: Thank you so much for your kind words in regards to Dear Philomena! I’ve found so much strength through practicing radical vulnerability and it’s resonance with others gives me hope. Through sharing myself unapologetically, I have found that others feel more inclined to likewise share parts of themselves that don’t often come to light. This is not only important but necessary for the healthy expression of the gamut of emotions that we experience.

My novel was difficult to write: Physically, through the pain and exertion that writing rolled on my body; mentally, through rehashing traumatic experiences; emotionally, through the dichotomy of catharsis and pain; and spiritually, as I wrestled with my faith. The novel was, however, born out of a fear that I would not live to see the next year. A fear that put life in perspective. A fear that was not actualized but a fear that was necessary. Necessary to be as unabashedly vulnerable as I was. Philomena was the one person that I could speak to with no fear.

Gaamangwe: I love that you call it radical vulnerability. Because being that vulnerable with yourself and others is so brave. That you wrote this during a difficult health period in your life is inspiring.

What was the most urgent perspective about life that you felt you needed to explore and express through Dear Philomena?

Mugabi: The most urgent perspective that I felt was necessary to explore through Dear Philomena is the truth that some things cannot be overcome. There is a narrative that all struggles can be overcome, and that if you haven’t overcome your respective struggles, it’s either not your time yet or you haven’t tried hard enough. I’ve encountered this multiple times in relation to my disabilities, blackness and other marginalized intersections: I’ve had people tell me my disabilities were the result of me not praying hard enough, and I’ve had doctors tell me that I wasn’t trying hard enough to get well even though I tried everything they suggested. This invalidation of marginalized folks through the narrative of overcoming is one of the major themes I wanted to explore in my book. I want to and do let people know that it’s okay not to be okay. Some things cannot be overcome, they can simply be managed and that is very different from giving up.

Gaamangwe: Acceptance of things as they are is also empowering and inspiring. Do you recall what led you to this realization that not all things are meant to be overcome?  One of the running themes of Dear Philomena is your interactions with the different doctors, many of whom unfortunately ended up with little or no shifting and constant impact with regards to your chronic pain. How has your experiences changed your relationship and interactions with modern medicine?

Mugabi: Before my two strokes that are detailed in Dear Philomena, I was very much a Type A overachiever who believed in the power of pure force of will to overcome all odds. I looked up-to superheroes like Spider-Man and Batman who have no line between perseverance and insanity. I was incredibly persevering, often to my own detriment. When my strokes led to newfound disabilities that could not be overcome by sheer force of will, I was left at a crossroad, unsure of what to do if perseverance didn’t work anymore. So, instead, after much reading through disability theory, I vowed to be more gentle on myself and accept that not everything could be overcome.

My experiences with various doctors and health professionals have made me incredibly skeptic of modern medicine’s ability to treat people who do not fit into the neat little boxes of expected illnesses. The medical establishment is overworked, highly stressed and not given enough time to work with individual patients. Not to mention, medical practice does not make you infallible. These leads to cases like mine that don’t fit into a neat little boxes slipping through the cracks. I’ve had multiple doctors tell me that I’m crazy because they couldn’t figure me out. I’ve had doctors treat me as a fascinating medical mystery instead of a human being. All of this has led me to become a stronger advocate for disabled voices like mine, particularly those that don’t fit into the neat little boxes that the medical establishment is best suited to treat.

Gaamangwe: How do you translate the realization that not everything can be overcome to the purpose of pain? I mean to say, what do you believe is the purpose of your chronic pain?

Philomena was your rock during these hard days with the doctors, was this in a literal sense or it was philosophical? I ask because I understand that Philomena is essentially your potential self. Tell me more about what Philomena means to you as the writer and the physical self who was actually going through the illness.

Mugabi: I honestly don’t believe that there is a purpose to my chronic pain. Life is unfair and often amazing things happen to undeserving people and terrible things happen to people who don’t deserve them. My chronic pain has taught me plenty but I’d still take not being in pain any day over my current state. In his brilliant mixtape ‘Innanettape’ (unfortunately in my opinion, his music has gone downhill since then), the rapper Vic Mensa says “Everything happens for a reason, if you choose to look at it that way,” which I concur with. I don’t see any deeper meaning or purpose behind my chronic pain. Has it taught me plenty? Definitely! But does it have a beneficial purpose? I don’t think so. Nobody deserves to suffer.

I am a firm believer in the collaborative nature of art. Once a piece of art leaves an artist and engages/interacts with an audience, it no longer belongs to the artist. The art is now an ongoing collaboration between the artist and their audience that changes based on interpretations and engagement. Therefore, I do not like telling audiences how to engage my work. All interpretations are valid, so I ask, who is Philomena to you?

For the sake of clarity, however, I deliberately left the character of Philomena as very ambiguous and open to interpretation. Truth be told, Philomena morphed during the writing process to become a lot of things to me:

1. Philomena is who I was supposed to be. I was supposed to be born as a girl and given the name Philomena. My mother has repeated this story to me throughout my childhood and part of me always wondered what life would have been like had I been raised as a girl named Philomena.
2. Philomena is representative of my femininity/female identity.
3. Philomena is a combination of several close female friends and representative of the love and friendship they provided during a year I was supposed to die but somehow lived through.
4. I am Philomena.
5. Philomena is the perfect friend. Someone who can’t really exist but is full of love, validation and support. She is what I aspire to in friendships/relationships.

Gaamangwe: I agree with Vic Mensa. We must consider that perhaps purpose goes beyond our conscious human understanding of life. That the lessons you learnt are purposeful to your soul evolution. I believe in a safe universe, meaning even within chaos and what seems unfair, there is always a purpose. But this idea of purpose will always take us back to the ancient question of what is actually the purpose of life. And only from there can we bring it to our personal life.

I imagine that being that close to death brought you face to face with your existence and so in the same vein your ideology of existentialism. This came out also with your experiences with hallucinations induced by drugs. How was that experience for you? And how did all this shift your relationship with your mind and body?

And on Philomena,  I am one of those lucky people who have a few Philomenas in my life. People who have been my anchors in my hard days. We all need a Philomena in our lives.

Mugabi: In response to our earlier conversation, the hallucinations that I experienced induced by medication were utterly terrifying. I’ve had several physiological health issues since I was 9 years, so I learnt how to best adjust and manage them. However, through all my physical struggles, I always had my mind. I could always fall back into my imagination, fantasies, world-building and art. Losing my mind, which was heavily intertwined with my sense of self-worth, was devastating. It did however, help me come to terms with the unhealthy yet common behaviors that I have, such as attaching my sense of self worth to productivity.

I’m thankful to hear that you have several Philomena’s in your life, they are incredibly special individuals.   

Gaamangwe: In light of all this, I must share how inspiring you are. You continuously go through the most jarring pain and you still find time and courage to tell your story. I am in awe of you. Thank you so much for sharing with us the daily struggles that come with chronic pain.

One last reflection: now that you have mythologised your experiences and Philomena, how has this shifted you and your relationship with your pain? And do you have any last personal reflections you would love to share with the readers?

Mugabi: Thank you so much for the kind words and solidarity! It’s a difficult struggle, I remember a few years ago when I could barely write for 15 minutes every other day and had violent seizures and migraines as a result. I often wondered if it was worth it but now that I’ve built up my strength and endurance and could write a whole book and share my vulnerability and story with the world, I honestly still don’t think it was worth all it put me through but at least I got something of substance and meaning out of it that is impacting so many people and causing the start of so many important conversations on vulnerability. My relationship, with my pain shifts on the daily. When I’m having a low pain day, I prepare for the difficult days. When I’m having a difficult day, I struggle.

The last thing I would like to share with readers is a sincere note of gratitude, love and appreciation to all the incredibly kind souls who have supported my artistic journey. I couldn’t have written my book without my older brother opening his home and fridge and accommodations to me as a full-time disabled writer for six months. Neither could I have successfully done a 42 city book tour without my friends and family feeding me, opening their homes to me, driving me to bus/train stations, sending me encouragement and coming to my shows and buying books and merchandise. I am definitely not self-made and accomplished without help, so I am incredibly grateful to my friends, family and supporters for all the assistance they throw my way as I would not be here without them!     

Gaamangwe: Thank you Mugabi for conversing with me.

Gaamangwe Joy Mogami is a writer, filmmaker and interviewer from Gaborone, Botswana. Her poetry has been published in Brittle Paper, Afridiaspora, African Writer, Kalahari Review, Poetry Potion and Expound Magazine. Her interviews have been published in The Review Review, Praxis Magazine Mosaic Magazine, Alephi Magazine and Peolwane. Gaamangwe Joy Mogami is the Founder and Managing Editor of Africa in Dialogue.