Disability and resilience: Why the storyteller matters

Four years ago, I was privileged to participate in a poem reciting competition and emerged the winner of three awards. My success was featured in numerous articles about people with disabilities and who are defying odds.

When the master of ceremonies called my name and I was riding onto the stage in my wheelchair, little did I know my poem would win me three accolades. In terms of the number of awards, it was the biggest victory for a single participant that night.

Yet, immediately after the competition, there were numerous comments in news articles and on social media platforms about how I was not that good; about how the judges felt sorry for me because I was in a wheelchair.

It served as a reminder to me that, when you have a physical disability, you have to fight harder than most of your peers to reach your goals and you have to fight even harder to prove that you got there because you deserved it, not because the world felt sorry for you.

So, stories about persons with disabilities’ paths to resilience are often reduced to singular charity narratives and inspirational speeches but, despite the odds, we defy every day to be more than that.

Preparing for university

As a person with a disability who uses a wheelchair to get around, the education system in Rwanda is a nightmare, literally, from the way institutions are built to the way their education programmes are offered.

Most of my friends with disabilities who were good in school did not make it to university, mostly because having disabilities means everything is extra-expensive and requires more efforts, from transport to withstanding bullying in schools to finding the school that is ready to accommodate you, among other issues.

So, when I was preparing for university, I knew for the first time in my life that I was not going to settle for less because I fought so hard to survive my high school years in a small village and finish with high marks.

It meant I had to fight for all friends who didn’t make it, for everyone whose story could be reduced to just a charity case.

Luckily, I was able to be selected into the African Leadership University and Southern New Hampshire University (SNHU) through its Kepler programme, and I ended up attending SNHU because it was more accommodating to my situation.

It is one of a few inclusive institutions but I still sometimes encounter teachers’ subconscious discriminatory treatment.

Being the only student with a physical disability in the whole institution means that these are stories I don’t have in common with other students.

It can be discouraging on occasion to realise that my path to resilience means I have to work harder than others to achieve the same thing and to prove I deserve to be there.

Earlier last week, I reflected on my experience as a student with disabilities when I recently attended the virtual dialogue titled ‘Pathways to Resilience: African youth and Africa’s transformation’ presented by the Alliance for African Partnership (AAP).

This is a consortium co-created by Michigan State University with different African institutions and other international collaborators.

What struck me and stayed with me after the dialogue was that it matters who tells a story.

In my circumstances, this means that the negative narrative surrounding persons with disabilities in higher education results in negative developmental outcomes such as our ‘deficiency’ and ‘dependency’ is emphasised instead of our resilience and threads of strengths because we are not the ones telling these stories.

Alarming concerns

Disability per se is still considered a barrier to self-enhancement and making important contributions to society. It is even harder for people with disabilities to acquire higher education.

This is largely because we live in communities that are subconsciously and consciously socialised to have negative attitudes towards the conditions of persons with disabilities.

Elizabeth Mwambulukutu, a storyteller who has been using her talent as an instrument for shaping community narratives, emphasised during the AAP dialogue that it matters who tells the story, emphasising that, “According to the African Narrative, only about 14% of the story about Africa is positive in the global media.” The percentage raises concerns and one can ask: “Who is telling these stories?”

When you look at the percentage of people telling the stories of persons with disabilities, you find out they are people who do not have these disabilities.

So they present stories from their perspectives, namely that disability is a barrier to self-enhancement. Hence, higher education institutions tend to have low expectations of students with disabilities that undermine their potential.

Poverty

The reality of financial advantage or disadvantage when it intersects with disability is known but not spoken about. It is important to recognise that some of us are privileged.

I heard a girl, Chantal, with a physical disability, who spoke about disability and poverty where she encountered “a wide range of out-of-pocket expenses” that weighed heavily on her household finance. “I had to drop out of school because my family could no longer afford to pay for me,” she said.

It is extra difficult for persons with disabilities to overcome these difficulties because studying when one has disabilities, coupled with poverty, is extremely expensive. On top of that, there are so few scholarships or opportunities to support persons with disabilities.

Discussions around inclusion often centre on infrastructure and equal treatment without recognising that equality cannot be achieved when people are not starting from the same point.

On mental health

Most studies today emphasise that the primary factor to resilience, the capacity to adapt well in the face of adversity, is having caring and supportive relationships. The emotional climate at home and at school where most persons with disabilities are predominantly victims of attitudinal biases can take a toll on their mental health.

The bullying and discrimination at home and at school reduce their self-esteem and can, in turn, cause depression, unhappiness, insecurities, and poor performance, among other problems.

There were times when I went through this phase, and I did not want to be in the school because my fellow students stared at me or the way they sometimes acted around me. I would look for all possible excuses to skip classes because, most days at school, I felt as if I was in survival mode, and it can get tiring to exist in survival mode without getting a chance to enjoy what’s around you.

I was able to go through that phase because I had the privilege of growing up in a loving and caring family. I knew that I had a loving family to go home to and it kept me moving, but that is not the case for all persons with disabilities.

Rwanda’s perspective

It is worth appreciating the progress that has been registered over the past several decades in the Rwandan education system as far as inclusion is concerned.

First there is the law requiring new institutions and each home to set up accessible buildings and for old institutions to renovate their infrastructures and make them accessible to people with disabilities.

There are also laws that prohibit discrimination on the basis of disability and guarantee that people with disabilities have an ‘equal opportunity’ to education and to participate in Rwandan life. However, there is a need to involve people with disabilities in decision-making.

A few days ago, I went to a certain college to conduct my bachelor’s research for my final year in university, and it had a path for wheelchairs. However, when I tried to use it to get to the second floor, it was too steep, and required two students to push the chair.

I thought of who made the path and immediately came to the conclusion that they did not consult a person who uses a wheelchair, because that path is not accessible at all.

All in all, the drive for inclusivity will never be achieved if policymakers do not involve persons with disabilities while making these policies.

It matters who tells the story, and it is the people with disabilities who can best explain their experience and what inclusiveness really means for them.

I still remember the first time I went on stage to recite my poetry and how my winning story became one of the world ‘feeling sorry for me’.

Our stories, as persons with disabilities, are told with a greater focus on our vulnerability and the lesser focus on our resilience even when so many individuals with disabilities have been resistant to different forms of adversities and capable of overcoming different life challenges and difficulties.

The message I got from the AAP dialogue still echoes in my head: I have so many stories to tell. I have to tell them because it matters who tells the story. And here I am defying all odds and telling my story and that of my peers, many of whom have not been able to attend even basic education.

This commentary has been written by Ange T Ashimwe, a third-year student enrolled in the Southern New Hampshire University’s Kepler programme in Rwanda.