I recently caught up with first time author, Maureen Bvuma ahead of the festive period break, to speak about the conceptualisation and writing of her book, Queen On Wheels. I discovered just how much it takes to write about living a life with disability on the southern tip of the African continent.
Nolan Stevens: I must mention that the first thing I liked about your book is the cover, it captured my imagination immediately. That’s why my first question is going to have to be, how did the book title and the cover art come about?
Maureen Bvuma: Okay, so the title came a few months before the book came out. I had started a hashtag on Facebook; every time I posted I would end with #queenonwheels and then my mentor said to me, “I think you should call your book that.”
So, that’s how the title came about, it took me quite a while to warm up to it but ja, in the end it made sense. Now about the cover, shoo, I’m a very creative person and I wanted to do something different. I didn’t want to have the whole, my face on a cover thing, I feel like it’s done all the time. I wanted something that stands out and grabs people’s attention and that’s what I came up with.
NS: Yeah, for me it’s also reminiscent of Game of Thrones you know, with the iron throne with all the swords, which made me think, this chick is nerdy, I like this.
MB: When I thought about it my editor was like, “Are you sure it’s going to work?”
I said, “It has to work, I don’t know how but we have to make it work.” I even bought the props; you know, like the crown. It had to be perfect.
NS: Now for the more meaty questions, obviously I read your book, read a few reviews and listened to the radio review that you sent me. When you are a person living with disability, how much of that story do you tell and at what point do you think to yourself, I’ve dealt with this enough? Just in terms of that whole process of writing, from conception, self-editing, editing and publication, how long did that last?
MB: from conception, shoo, I think about two or two-and-a-half years just trying to get the right feel for it. As you say, it’s also a question of how much I actually want to divulge. I asked myself, Am I ready to do that? I think I deleted more than I had written, to be quite honest. There was some stuff I felt I was not yet ready to share with everyone. So ja, it also made me realise that there were personal things that I still needed to deal with. It was a process and I actually went to see somebody about it, just to understand where I was mentally, and if that was something that I really want to do.
NS: I think I’d read somewhere that you said you’d always wanted to write a book. I’m now wondering if it was more challenging in the conceptualizing phase or if it got more challenging as you progressed to the writing?
MB: I think it was easier when I was thinking about it. Writing was more challenging because I had to open up, I had to relive a few memories that I thought I had buried. Writing just forced a lot of issues to the fore. That was the hard. The scariest part was writing putting everything on paper, knowing that once it’s published that it’s going to be out there for everyone to see. It was a very hard process.
NS: During that writing process, was it a case of speaking to people who had been with you on your journey, or did you rely on your own accounts, your own memories of dealing with how you felt at the time? What was that process like?
MB: It was all about my memories and what I’d dealt with at the time, and also the purpose of this book wasn’t really for me to tell my full life story. What I wanted to do was to write a book on life lessons, a book that was also about self-discovery, but in order for me to do that, I actually had to tell my story. I felt it wouldn’t make sense to write a story that I didn’t experience. So, I had to show that I actually went through what I’m talking about to get to this point.
NS: Just to step away from the interview for a few minutes, the process of having to grapple with disability, how you relate to the world and how the world relates to you, is something that I had to grapple with too. Just a little bit of info on me. I was involved in an accident when I was nine that caused brain injury and left me, well what they call hemiplegic or semi-paralysed. So, when I got to my final year of Fine Art at varsity, and I had to figure out what it was I was going to focus on for that year, I chose my experience of disability, not knowing how hectic it was going to be. I explored feelings of being trapped in my body because I was dealing with the transition of going from being able-bodied to being disabled. That was a very difficult push and pull for me because a lot of the time I think everybody expected me to have this outwardly positive reflection on life because people would say things like, “Oh, you’re such a motivation to me.”
I remember feeling like I don’t want to be a motivation, I just want to be me. You know what I’m saying. Sorry about that little rant, but the reason why I am telling you this is because I want to know what your motivation for writing is. Was it a cathartic process for yourself, or did you want it to be uplifting to other people?
MB: For me, I’ve always used writing as a way of healing myself. This is something that I’ve done from a very young age, and also, I’m not a very vocal person, it’s always been easier for me to put pen to paper and express what I feel. One thing that I’ve always struggled with, like you just said now, is people looking at you and saying, “Oh, you’re so positive” and “You are such an inspiration” or “We can’t believe you wake up and go to work every day.”
I’m thinking but this is what people are supposed to do.
How is that a form of motivation to anyone? For a very long time I thought I don’t want to be anyone’s motivation. I want to just be me. You know, the fact that I use a wheelchair shouldn’t make someone who is not a wheelchair-user feel like, Shame man, she’s inspiring me to be better. That’s not what it’s about. So, when I wrote the book, I wanted people to know what my life is like. I wanted them to understand that I am this way but I work very hard; I push, and I go after what I want. As difficult as it is, I still do it, just like anybody would, so I don’t want people to say, “Ag shame, just because she can do it, I can do it too.” 
It just doesn’t feel right, it’s actually irritating to be quite honest.
NS: That leads me onto my next question which relates to how other people have described you as an over-achiever. This is something I can relate to, I’ not sure if the same can be said of you, but because society thinks that I won’t be able to do something, I often adopt an attitude of I’m going to do this and I’m going to do it better than you. That’s basically how I’ve lived my life.
MB: Exactly. It’s the same for me. That’s where it all started. I speak in my book about a homeless man who said something to me that shook me. From that moment on, I started reacting to everyone around me and specifically to people who would look at me funny. I said to myself, You know what? I’m going to prove these people wrong. Just because I’m in a wheelchair doesn’t mean that I can’t do it. I’m going to do it and I’m going to do it well. From then on, I just haven’t been able to stop. I want to do everything because in my mind I feel like I can. I don’t know if this is a good thing or a bad thing.
NS: I definitely applaud that, I’m glad that I’m not alone in that approach to life.
MB: No, You’re not. I think sometimes that it’s a bit detrimental to ourselves because once you start you just don’t want to stop. It’s like you don’t even have a moment to rest or a moment to think because as soon as you’re done with one project, you want to move on to another and another and another, you know, so ja.
NS: Does that mean we’re going to have another literary project from you?
MB: Yes. There’s going to be a couple more, I don’t know how many but there’s going to be quite a few.
NS: That’s great to hear, but speaking of more books to come, how is the South African market in terms of dealing with literature centered around disability?
MB: Shoo, It’s a non-existent market, I’d say, to be quite honest. I’ve obviously seen and heard of a few disabled people who’ve written books, but I’ve never seen those books in bookstores or heard anything further. Books by disabled writers are very rare but it’s a market that I’m hoping will change within the next year or two.
NS: That’ something that a lot of people don’t understand. Like this interview is going to be for an Australian publication. The reason why I’m telling you that it’s going to be in an Australian publication is because a South African publication just won’t pick it up. You know, it just doesn’t seem relevant for South Africa, for some reason.
MB: Ja, I mean look, there are a lot of things when it comes to disability in South Africa that are pushed under the carpet. It’s very sad because it’s not every disabled person you come across in South Africa who’s had the opportunities that I’ve had. Had the exposure that I’ve had, or been able to put themselves out into the world like I have. It’ s hard. I think being a disabled person in South Africa is really hard. You need to have the right resources and the money to be able to do anything.
NS: I was the UK for Unlimited; a disability arts placement program. There were a whole lot of dignitaries from all around the world; I’m talking Europe America and Asia, very few from Africa. I think I was one of maybe three people from Africa. They couldn’t understand why I knew so little about disability culture.
I was like, “It’s something that I’m not exposed to. In my circle of friends, I’m the only disabled person. I was the only disabled person I knew about in high school, actually since forever.”
A French guy saying to me, “But this does not make sense. The Congo has a very big disabled culture and this is in Africa, no?”
I said, “Yes, but the events that played out in the DRC and Rwanda and so on are very different conflicts to that of the Apartheid regime.”
In those parts of the Continent the governments were forced to deal with disability because half of these populations were affected by war with amputees and so-forth. Whereas we haven’t had those challenges. This is something that people really don’t understand. In the UK, while we were fighting the Apartheid regime, they had a revolution relating to disability where disabled people were literally chaining themselves to trees and buses, demanding rights and the same access to transport and events and education as abled-bodied people. That’s why when you go to places like London, disability access is something that is a must in buildings and public transport and not only for people with wheelchairs but across the board of the disability spectrum; from braille to audio assistance, like beeping sounds at traffic lights. How much of that do we see here? You go to a bathroom in Jo’burg and “paraplegic” is written on the door to define disability.
MB: Yeah, exactly, and even when you go into a bathroom, someone is using the “paraplegic” toilet, someone who is not supposed to be using it. It’s sad for me as well. I went to a school primarily for disabled people, so that is the culture I know. Outside of that, I don’t know any other examples of disabled culture. A lot of my friends are not disabled, so they won’t really understand what that means. I feel like we need to look at disability more here in South Africa. I don’t know if the government should do it or if we as disabled people should make it clear that this is what we want, but something needs to be done.
NS: I definitely agree. Do you think going to a school for disabled people, changed or molded the way you have prepared for life?
MB: It actually didn’t have much of an effect on me. I felt segregated because I live in a world where I’m excluded from what everybody else is doing. In reality, there’s more to life than just going to school. I mean, we weren’t really exposed to what the outside world had in store for us. My training in that regard happened when I was in college because I was the only disabled person and it was a whole culture shock for me having to navigate through that world by myself without the help of the teachers or anyone. Plus getting my class mates to understand that I’d needed help with this or that every now and then was a battle. But I got some satisfaction from fighting that battle. Schools for people with disability, yes, they’re good in catering for the needs of disabled kids, but that kind of school doesn’t really prepare you for what the outside world looks like. People in the outside world can be cruel. That kind of school doesn’t emotionally prepare you to deal with all of those things.
NS: I had the accident the year before going to high school. Once I was well enough, I did my last year of primary then went straight into high school, which was an art high school. I powered through that as a very angry teen. Got to varsity and powered through that as a very angry twenty-something. I’d never really had exposure to disability culture until three years ago when I went to the UK for that disability placement. I think that experience helped me a lot, because I’d had problems with self-confidence and depression, but there I saw that they had a completely different outlook on life in terms of being disabled. They use the social model of disability, which means the problem isn’t with us as disabled people but with society for not catering better for us, and these were new ideas for me. I wondered what I might have been like if I had been exposed to those ideas earlier, which is why I asked you about your schooling. I’m thinking that even though you may not have been able to deal with the outside world, that going to a school that caters for disabled people and mixing with disabled people may have boosted your confidence in some way.
MB: So, I have an aunt who is also disabled and my older sister as well. I grew up with them around me and my aunt was a very arty person. She did a lot of bead work which was displayed all around Cape Town and people from all around the world would come and buy from her. I drew my confidence from that. She was able to make something great of herself. People appreciated that about her. Also my dad boosted my confidence.
He’s always been the one who’s said to me, “Listen, if you want to do something, go for it. I believe that you can do it.”
He’s always told me that I’ve got a lot to offer the world.”
I’ve always had people around me who helped boost my confidence, even when I went to college, I was confident. This made it easier for me to navigate the working world too.
NS: I think your condition is sometimes described as ‘Brittle Bones’, am I right?
MB: Yes, I’ve got Osteogenesis imperfecta. it’s a genetic thing that I was born with from my dad’s side; my aunt’s got it, my sister’s got it and I’ve got it. It’s passed on.
NS: How dangerous is it to live a day to day existence with a condition like yours; I know that you are really into music, does this mean that if you shake about too vigorously in your chair, that it could be dangerous?
MB: It was more dangerous when I was young because the bones are still very fragile. When I was younger movement was not limited, but I had to be very careful with what I did because I could just break a bone. Now my bones are I guess more stable, if I could put it that way. I’m still very careful, but I’m not as limited as I was before.
NS: Does your body restrict you from doing things like hanging out with mates, or going out to do things like going to the movies?
MB: No, no, no, it doesn’t limit me at all. I am out and about, except when it’s cold, other than that I am out and about either going to the movies or going out to a spa, or whatever we think of doing with my friends. Ja, I don’t feel like I have to limit myself and can do all these fun things whenever I want to.
NS: How does being disabled affect areas such as dating?
MB: I do make sure to tell people up front, so that we don’t need to drag things out. I feel people know what they want. If being with someone who’s disabled is not on the cards, then it’s not going to work.
They’ll quickly say, “Actually I’m not interested.”
Then we can both move on. Shoo, I’ve met some interesting characters, like they’ll say things like “Ja, I don’t have a problem with that you’re human too.”
I’ll be thinking okay that’s not what I asked you, I didn’t ask you if I was human. I asked if you are okay with the fact that I’m disabled?
Then I’ve also met some who’ve been like “Listen, it’s okay, it doesn’t really matter.“ I think sometimes you can tell when a person means it and when they don’t mean it. So, when it comes to dating, I can say that I’ve been lucky, in that I haven’t found out after a while that they’ve only been with me because of pity or whatever.
NS: When you do move out of home, start living alone or with a partner, what aspects of life do you need to consider?
MB: Firstly, cupboards have to be at a lower level. I have to think about being able to reach certain things. I love cooking, so, when I’m in the kitchen, I want to be able to reach the stove comfortably. In the bedroom, for example, I want enough space to move around in my chair. When it comes to things like cleaning, I can do some things, but sweeping the floor, or changing the sheets, somebody else would have to do that. If I am going to be living with a partner one day, he also, needs to understand that there are limitations, and where there are limitations, he will have to fill the gaps. If I’m going to be living alone then great, I’ll get a helper and that helper will have to fill in the gaps when I can’t do certain things.
NS: The reason I’m asking this is because when you said to me earlier today that you’re going to be taking an Uber to this interview by yourself, it threw me. I assumed you were coming with a support person, a friend or family member.
MB: No. No, no, no, a lot of the travelling I do by myself. If I do need extra help, I may ask one of my sisters, “Don’t you want to come with me?”
But, that’s rare. I catch an Uber. As I know I’m going to be safe. I can get in and out of a car by myself, I can push my chair by myself, I’m pretty independent.
NS: How accessible are Uber cabs?
MB: Uber’s got this thing called Uber Assist now, where they are trained to assist the elderly and disabled. So, whenever I request an Uber, I request Uber Assist and the driver already knows that whoever he is coming to pick up will need assistance. Ja, It’s actually been very helpful because I don’t have to sit there and explain myself. The driver just comes out and looks at my chair asks if I need help getting into the car; takes the chair, ja.
NS: Awesome, I didn’t know about that. Let’s go back to your book. Obviously you’ve been hitting the media trail, how has that been going?
MB: It’s been interesting, especially when it comes to the reviews; seeing how people have received my book; some have been very emotional about it, some have come forward to say that I should have written more of this or added that. So, I’ve gotten quite a few ideas for my next book. I’ve enjoyed people’s responses. Some say I have changed their perceptions or helped them deal with issues they are going through. It’s truly been a blessing, When it comes to the radio interviews, I’ve always loved radio. I was in media and journalism. I’m so at home with radio. I think maybe I should consider going into radio full time.
NS: I know you get asked this a lot. You went from journalism to the banking sector, how why, and when did all of that happen?
MB: You know, it’s not easy to get into the media industry in South Africa, even more so when you are a disabled person. It doesn’t matter how good you are at what you do. I realised that as much as I love the industry, I would probably be very poor or starving for a very long time if not for the rest of my life. So, when an opportunity to go work at Investec came up, I took it. I’d never imagined myself in the corporate world, especially in banking. I’ve learnt a lot about myself. I didn’t know I could be passionate about building a career outside of the media industry but I am.
NS: Cultural question right now; so disability has always inhabited a weird space on the Continent. With people saying things like it means you have bad luck, your family is cursed, you know all those kinds of things. The other day, I was out with some mates and a random guy came up to me and said, “Don’t worry I’ll pray for you. I can see you’re a good person.”
Half off me got really irritated and angry, the other half realized that this is the reality of living on the African continent. How do things like that affect you and how do you navigate situations like that?
MB: A lot of people, especially in Africa, see disability as a curse. I’ve experienced quite a few instances of people wanting to pray for me. Probably not my proudest moments because I’ve been rude in my response. I’ve never been like oh, okay. I’ve always tell them off. Sometimes I go home feeling a little bit bad because I’ve told an elder off, but the reality is people need to understand that disability isn’t some sort of a curse. I’m not sure if that means that we have to wait for the older generation to die out because it’s often the older generation who don’t understand. Having said that, people our age who grew up in rural areas unfortunately have the same mentality. They are exposed to witchcraft and those kind of cultural beliefs. It’s a pet hate of mine, it really is.
Whenever I go back home to Limpopo, there’s always going to be the one relative or random person who is going to say something out of context that is horrible, and I am unfortunately going to say something horrible back, or ignore them and never talk to them again. Some time ago I was at the mall and there was this guy following me about while I was shopping, eventually he stops me and asks if he can talk to me. My sister was like oh my God, Maureen, this guy is hot maybe he wants to hit on you. Only for this guy to tell me he is a pastor and he wants to pray for me so I can walk. I was like my God even in 2019, you still believe in things like that, it doesn’t make sense.
Unfortunately, it’s something that we have to deal with, I don’t know for how long, but it’s there.
NS: Catching up with this royal soul was a reminder of just how colourful a disabled life is. Her book, Queen On Wheels is a stark reminder of the many challenges disabled people must grapple with. Holding court with this Queen caused me to reflect on the lives of disabled people in South Africa. I am curious about the pages she deleted. While, I fully understand why we self-censor, for those of us living a somewhat censored existence, those words that do make it to the page speak so powerfully, they can only encourage one to find and speak their own truth.
Published 21 January 2020
MAUREEN BVUMA is a disability activist who lives in Johannesburg, South Africa. She has just written and published her first book, Queen on Wheels, Gauteng: LH Exquisite 2019. Maureen studied media and journalism at Rosebank College, and also has a diploma in human resources management. She currently works as a compliance administrator in the banking and finance industry.
NOLAN STEVENS was born in exile in Swaziland but has lived the better part of his life in inner-city Johannesburg. His mother, Stella May Ntsihlele wrote children’s books, short stories and plays. He attributes his love of writing to her. Nolan is a visual artist who works with ideas of Blackness in an Afro-urban context. He explores various aspects of black identity in his art making, arts writing and curatorial projects. He was chosen as UK Unlimited’s 2018 international placement. The experience has shifted his perspective of how he views disability and how he sees himself as a disabled creative contributing to the understanding of disability arts. Nolan feels that barriers faced by people with disability in South Africa are difficult to overcome, both in terms of infrastructure as well as public education. He was the only disabled artist at art school, university and in his immediate artist environment. He did not want to be pitied and tried to fit into the ‘norm.’ He has always had to make do and try to work within the structures that are already in place. He is only now beginning to seek out others in the disability arts community.