A Matter of Perspective
With the BOLD MOVES campaign we celebrate people that dare to question the status quo and break new ground. Alex Munyambabazi had to be part of this campaign. His story and his work show in an impressive way that everything is a matter of perspective. A conversation about his life, his personal BOLD MOVES, and his vision for a more inclusive world.
Alex, at Circleg we already had the great pleasure to get to know you and your work. Could you please introduce yourself to the audience?
Of course! My name is Alex Munyamabazi, I am from Uganda and I am a founder of an organization that supports people who really need mental health services and psycho-social support. I am currently a medical student and I am very excited about the Bold Moves Project. Because to me it is important to celebrate people who are trying to make a difference in their communities. The fact that our friends from Circleg came up with this idea makes me very happy.
To run an organization and to study medicine at the same time is already a BOLD MOVE. To which activities do you dedicate yourself the most to at the moment?
Mostly right now I am dedicating myself and my time – apart from school of course – to serving the people that really need our help. Myself and the team at the Amputee Self Help Network Uganda, we try to see how we can best reintegrate the individuals that are living the new lifes that they have acquired due to the traffic accidents. Because to be honest, when someone loses a limb, when someone loses a part of their body, their lives change but also the life of their families. I am dedicating my time to try and explain to these people, “let’s just look at it as an obstacle and focus on what lies ahead”. Because that is not the end of life. So, at the Amputee Self Help Network Uganda we provide psycho-social support and peer to peer counseling. We also try to ensure that these people mentally recover from their post-traumatic disorders they have gone through when they encounter those traumatic incidents. We work mostly with hospitals that invite us to interact with individuals who will be amputated, pre-operative, then we continue post-operative until they get physical rehabilitation that entails acquisition of prosthetic limbs. We are also visiting them at home. As I said earlier, we have realized that some of these individuals› recovery is delayed because of some of their families› attitudes. We are visiting them at their homes in the communities and trying to change the perception of the people who live in these communities towards the individuals who have lost a limb or parts of their bodies.
What would you say is the biggest challenge in this work that you do?
The biggest challenge usually is logistics and the time and costs associated with that. Because we have to visit different people in different hospitals in all parts of the country. For example, the other weekend we were in the Northern part of Uganda, where we met incredible people with incredible stories. They have lived a long time without limbs which they lost due to gunshots and landmines in 20 years of war in the northern part of Uganda. We have to move a lot to different places to meet these individuals because in our health care set-up there is nothing like these services. If you go to the hospital after encountering a road traffic accident they will do a constructive surgery or amputation and after doing that they only treat the wounds and send you home. But in our experience the biggest challenge is not the healing of the wounds but the mental status. The fact that the national health service policies don’t provide those services is hard enough. That is where we come in. But another challenge is the fact that we are a group that is doing that work out of our lived experience. None of us is a professional psychiatrist, none of us a professional counselor, but we are doing it out of our lived experiences. Sometimes, you realize some different patients need different approaches and that is where professional training would be an advantage.
I believe I don’t have to ask you what moved you to start the Amputee Self Help Network because as an amputee you know the challenges very well.
Actually, the question of why I came-up with that idea of the Amputee Self Help Network Uganda is very important. I lost my leg to a landmine around 17 years ago. It took me almost 9 years to actually live with the issue normally, and to be comfortable with it. I didn’t know how to deal with it. That has brought me down, that has cut my self-esteem to almost 0. My confidence was on levels I can’t understand. It was tough, living in the community was not easy. Everything changed when I met the very first person that I was asked to speak to as an amputee. It was a 14 year old girl that had to undergo an amputation but she had refused to amputate her leg. So they have invited me to the hospital, I sat down, I told her about my story, what has happened and what I have tried to do during the process. As I left, she actually agreed to do the amputation. Her parents were at home and were asking me what I told her. To be honest, I went there not knowing what to say because I was still suffering myself. But just by telling my story to the girl she gained another perspective. That was the time I realized that I didn’t have to continue living in suffering but rather embrace what has happened to me and celebrate life and ensure that I use it to change other people’s lives. And from that point I started providing these counseling services, talking to different people until I realized that there were so many people waiting for this kind of service. Then we had the idea to register an organization and talk about our services in order to have a bigger coverage as I had just by myself. That was when the Amputee Self Help Network Uganda was born. What motivates me to continue doing this is the difference we can make to the people we meet. You meet people that are really down and don’t want to leave their house because their family is ashamed of them, they think they are an embarrassment for them. But then you meet these people in their homes and talk to them and immediately after having a conversation with them you see smiles all over their faces. You see them smiling. The next time you come they are telling you what a difference you made in their lives. Or you go to a hospital, someone is supposed to have an amputation as it is the only way to save their life and they say they rather want to die than to live without a leg. You then have a conversation with them, they see you and that you are ok living your life. You are progressing in life, you are doing many different things and in the end, they end up agreeing to the procedure. To me the gratitude I get from that is what keeps me moving. It is what makes me wake up and say: “I want to continue doing it, because it makes a difference.”
«To me, picking myself up and living a life in a way that changes other people’s life is a bold move.»
We see so many BOLD MOVES of yours in what you just said. What would you consider as a Bold Move that you did in your life?
I think the bold move I have done in my life is picking myself up and choosing to continue. Before all this, before I was talking to people, I tried as much as possible to hide my prosthetic, my disability. Because I didn’t feel comfortable with it. But when I started doing this work I decided to put on shorts all the time. I want to show off my prosthetic and the life I am living. I want to show the people that this has happened to me and this has nothing to do with me. So, I picked myself up and went back to school. To me this is bold. Another bold move is the fact that with the Amputee Self Help Network we are changing people’s lives. The people we meet are not only accepting the life they live now, but they want to live it confidently the same way we are doing it. They are choosing to take a decision that positively impacts their life just because we are meeting them. So, to me, picking myself up and living a life in a way that changes other people’s life is a bold move.
If you think about the future, what would your ideal future look like?
As an individual I want to finish medical school. However, the whole ideal future is still centered around the people we are trying to support. We want to make sure that we have a rehabilitation complex, where someone who has an issue can come, not just for medical services, but also for mental rehabilitation, for acquiring life skills and to be trained as what we call adaptive sports, parasports. Our intention is that at least in 10 years through the rehabilitation complex we should be supporting para athletes that are bringing medals to Uganda from the paralympics. That is the ideal future. If I ever make it to train an athlete that brings a medal from the paralympics that would be the ideal end of this whole story.
«Deaf people are not deaf because it is something that has happened to them or they were born with. They are deaf because we the people who know how to hear and speak don’t know how to sign.»
And if you need to imagine the future more on a societal level?
You go to a community and you see people that are ashamed about people living with disabilities. I would love to see everyone embracing it, and knowing that this could be me and looking at it just as an obstacle and finding ways to make it easier for everyone else who has these challenges. Because to be honest, in the communities we live in, in the societies we live in, they are the ones that actually make us disabled. For example, if you construct a mall and you don’t have elevators and the service is on the 7th floor, I will not be able to go to the 7th floor. In this case, you are making me disabled. It is not about what happened to me, but rather what you are doing (or not doing). I normally give an example with deaf people. Deaf people are not deaf because it is something that has happened to them or they were born with. They are deaf because we the people who know how to hear and speak don’t know how to sign. Because if we knew sign language, then these guys would be able to communicate with us freely without saying a word. So, us not knowing the sign is what makes them deaf. Also, for us that live with a disability, society needs to understand that it could also be them. Therefore, I highly appreciate what Circleg is doing, by getting rid of the plastics from our environment and transforming them into beautiful prosthetics. That’s the kind of thinking I would love to see in our societies.
What kind of steps are needed to reach this future?
The steps we are taking is to advocate. We are trying to show the communities we live in that if certain things are being done, then the lives of people like us would be easier. We don’t want to live as beggars, we want to live in the community on an equal level as our peers in the society. I think our communities, our societies need to come on board and need to start looking at it from a perspective that we look at it. And of course, on a national level we need to push policies for prosthetics and assistive technology in general since they are very very important to us because they bridge the gap between someone who is disabled and someone who is not. If I have a prosthetic, I am almost complete. I am complete, because I can do everything I want to do with my prosthetic. But you realize that these devices are very expensive. The step it takes to get where we want to go lies in our communities,, to ensure that they come on board and help us to advocate and take the message to the people that need to hear it. Where we reach a point to create a society that does not see the issues as minor issues, but more issues that need to be addressed better yesterday than today.
If you need to think about a Bold Move of someone else, who comes to your mind?
To be honest, I would start to think about the guys that are working with me at the Amputee Self Help Network. People like Charlotte Kangume and others. There is a group of people you haven’t yet met. All these guys are doing a wonderful job in the community. They are going to places and doing a lot of great things. However, the crown of it all is Circleg. That you guys decided to turn recycled plastic into something that can make a difference in our life’s – that is a bold move.
What is a bold move that you would love or wish to take next?
The next thing I would love to witness is being part of a society that embraces the differences we have – racial, physical abilities and culture to live together as one society, one community that doesn’t have to segregate against each other. I would love to get to this point and push people to not seeing differences in each other.