By Violet Ikong
It is Thursday morning in Kampala, the capital of Uganda, and rugby players using wheelchairs are starting to arrive at the sports arena of Makerere University for their weekly training. The players, who are in wheelchairs because they have suffered spinal cord injuries (SCI),are all members of the Uganda Wheelchair Rugby Foundation (UWRF), a nonprofit led by 29-year-old Jairus Wanyera, who has been living with SCI for over 13 years.
How it all started
In April 2008, while he was still in high school, Wanyera and his friends traveled to Jinja, a town in southern Uganda with numerous popular tourist sites. While visiting, Wanyera fell from a considerable height after one of his friends accidentally pushed him.
According to the World Health Organization, most cases of SCI are due to preventable causes such as vehicle crashes, falls, or violence.
“I didn’t know what had happened to me, but I remember I couldn’t move or feel my body,” Wanyera said. He was admitted to a public hospital, but the healthcare workers could not help him.
“They were just like me, confused and not able to find out what had gone wrong with my body after the fall and why I couldn’t walk anymore,” he said. About 80% of Africans rely on public health facilities for their care, but the continent’s public health system suffers from a shortage of trained health workers.
So Wanyera left the hospital in a wheelchair in October 2008 and started to search online for answers to understand his situation. His search convinced him he had suffered SCI.
It was devastating, and I realized from that moment that my life was going to change forever.
— Jairus Wanyera
“It was devastating, and I realized from that moment that my life was going to change forever,” he said.
People with SCI are two to five times more likely to die prematurely than those without SCI. The mortality rate is also highest in the first year after injury. But Wanyera wanted to live.
“I started looking for the right information to know what exactly I had to do to survive,” he said.
Leaving to get help
Wanyera learned that he needed to undergo physiotherapy. But his experience with the health workers in the public hospital convinced him to seek treatment at a private health facility in Kenya.
Then he learned he would need over $10,000 to pay for treatment. He was about to give up, because it was an amount he couldn’t afford, but his friends provided financial support so he could receive the treatment he needed. In 2009, he left for Kenya, where he did physical and occupational therapy at a private hospital. That therapy increased his stamina, and he learned to use a wheelchair.
Throughout his stay in Kenya, Wanyera never stopped thinking about how he could help people living with SCI in Uganda who were not as lucky as he was. He gathered information about how people living with SCI can adapt and be rehabilitated. And he wanted to promote awareness about SCI in Uganda.
“My experience with the health workers made me realize most people in my country did not know about spinal cord injury. I wanted to change that,” he said.
Back home to help others
Wanyera returned to Uganda in 2011 and resolved to help improve the lives of other people living with SCI. The first thing he did was start a social media awareness campaign. This opened the way for SCI discussions in Uganda.
“I started getting invitations from individuals and [nongovernmental organizations] to talk about spinal cord injury,” Wanyera said.
Eventually, he decided it was time to do even more.
“I told myself I could start a foundation to identify and recruit people who are of my kind, and rehabilitate or get them integrated into society,” he said. So he founded UWRF in 2018 to help achieve that objective. Today the foundation has over 80 members who are SCI survivors. A few amputees have also joined the foundation, in search of a safe space to receive emotional support.
“When I look around, I have a sense of belonging, and feel like I have a family here because I see people who go through similar situations as me. When I talk to them, they understand me,” said 29-year-old Sarah Nazziwa, who is a member of the foundation and has been living with SCI since she was 17.
As part of its approach, UWRF teaches people living with SCI to accept and love themselves.
“Before I joined the foundation, I did not have confidence in myself. It was difficult for me to move around the community in my wheelchair, but that has changed,” Nazziwa said.
South Africa has the continent’s only national wheelchair rugby league, but the foundation has successfully registered rugby as a sport suitable for people living with disabilities in Uganda. Their trained coaches (some living with SCI themselves) travel to identify young people living with disabilities – especially SCI – who are interested in playing rugby.
In addition to leading a four-hour training session every Thursday from 11 a.m to 3 p.m, Wanyera or someone on his team visits members in their houses to provide emotional support when the need arises. The awareness campaigns now include radio and television. And to make information about SCI easily accessible to anyone, UWRF is developing a manual about SCI which will be translated into local Ugandan languages.
“Information about spinal cord injury should not be available on the internet alone because so many people can’t access the internet or afford devices that are internet enabled,” Wanyera said.
The manual will be published early next year and aims to be the go-to place for people with SCI to find information about how to rehabilitate themselves.
It is not easy
But running a foundation like UWRF is expensive, and currently the nonprofit is operating without external support. Like most African governments, Uganda does not invest in sports for disabled people. So, UWRF is not able to buy all the equipment they need, such as streamlined wheelchairs for rugby and tennis – sports which require speed. Most athletes on the continent can’t afford these, so players have to use whatever wheelchair is available. And they do.
But Akanbi Kazeem would like to see that change. He is a wheelchair-using tennis player from Nigeria. He noted that “people living with disabilities have won several medals for Africa in international competitions over the years, but when it comes to financing sports for them, very little is being done.”
Despite strides being made over the years toward ending discrimination against people living with disabilities in Africa, the problem still exists. And Wanyera has much to say about this: “I had a lot of friends [when the injury happened] who could not relate with someone in a wheelchair. It was painful, and even though it’s better now, we still face discrimination. African leaders and policymakers in the sports sector have to commit to investing in sports for disabled people. They must make and implement laws that will have the welfare of disabled people in sports at heart.”
One of the foundation’s goals is to create a para-rugby national team like South Africa’s so that players with disabilities are not left out of sports. They believe this will help the public change their perception of people living with disabilities and put an end to discrimination.
But in the meantime, despite Ugandan society’s generally discriminatory attitude toward those who suffer from SCIs, UWRF’s players feel supported by each other. And Thursdays are the best day of the week for them.