Sylvain, advocating for disability rights in the DRC

I am Sylvain, a disability rights defender from Itebero in Walikale of North Kivu, Democratic Republic of Congo. I am the founder and Executive Director of Enable the Disable Action.

“At the age of three, as a result of the lack of vaccination against poliomyelitis, I had paralysis in my left leg, thus becoming disabled. As a child, I was faced with many cases of discrimination due to my disability. I could not go to school because my family did not believe I could study or do anything significant. Their advice was to learn a practical skill, like being a tailor, and make myself useful in that way.”

Resilience and determination

“But this is where my life started – because even though I had a problem with my leg, I knew my mind was capable. I did not accept what they told me, and I did everything I could to go to school. I turned to friends and asked them for support to set up my own small businesses and support my studies. From selling palm branches and sweets in the village and school to setting up and managing a payphone, I earned a small capital which allowed me to continue to secondary school.

“I could not afford to fail because this would confirm my family’s and the whole community’s belief that disability means inability.”

That’s what gave me strength. It sparked my passion for advocating for people with disabilities and influenced my decision to attend university and choose the faculty of law. My vision was clear: to become a lawyer who tackles all violations of the rights of people with disabilities.”

Disability in the DRC

“The socio-economic situation of disabled people in my country is marked by inequalities significantly higher than the rest of the population. They face challenges in all aspects of their lives; they have more difficulty accessing education, health, social participation, and employment.  They often lack economic power which leads to them being heavily marginalized.”

“Families hesitate to invest in the education of their children with disability, and people with disabilities themselves lack the confidence and motivation due to never having encountered successful role models.”

Enable the Disable Action

“Envisioning being a role model for the younger generation of people with disability in my country, I decided to create Enable the Disable Action (EDA) in 2017. EDA is an organization focused on capacity building, training, and awareness-raising on disability rights as well as advocacy on inclusive policies and programmes. Since receiving our official recognition in 2021, we have celebrated remarkable achievements.

Most importantly, our work has resulted in the promulgation of the first law promoting and protecting the rights of persons with disabilities in the DRC. The advent of the law was a sigh of relief. In the past, my actions were limited, but now, my work begins.”

Disability rights are human rights

“While the law marks a crucial step towards the empowerment of people with disabilities, it alone cannot be enough.  Several programmes and projects do not include individuals with disabilities as one of their priorities. Additionally, many state institutions and development programmes still overlook the needs of people with disabilities, and funding for disability rights advocacy is scarce. That makes my work very complicated because, without resources, I am not able to influence the processes and achieve the desired change in society.

As a human rights defender, I wish to address a wider audience and, in particular, those who hold power. Disability is often seen as a social case, focusing on finding ways to integrate people with disabilities into society. This can evolve into a human rights-based approach, recognizing that people with disabilities have rights, can stand up for these rights and ask for them to be respected. The universal design people with disabilities are advocating for is beneficial for everyone.”

Participating in Shelter City

“My time in the Netherlands has contributed to my personal growth and has taught me that I should not worry about everything. I do a stressful job, but I can also celebrate the little things, encourage myself, and commend myself. On a professional level, my stay has contributed to thinking strategically in the organizational framework and allowed me to network with more organizations in the same field.

Finally, my stay made me understand that I can give myself rest because my safety and mental and physical health are the priorities.”

“My work is important, but I would not know how to do it well if I was not well.And now, I feel as if I am in a new body with a new mind and renewed energy, necessary to continue my work as a disability rights defender.”

We thank Sylvain for sharing his compelling story and for his tireless commitment to upholding the rights of people with disabilities. Sylvain shares his vision in disability rights advocacy and his personal message as a defender in the video below.

Sylvain discussed his impressive work on disability rights activism and his personal account growing up as an individual with disability in an episode of the Talking Human Rights podcast series. Find the full discussion with Leens van Kessel LL.M below.