Jean Claude Mbonigaba: He hopes for improvment in Rwanda for People with Disabilities 

 

Jean Claude is a computer engineer who lives in Rwanda. He is the co-founder of an Information and Communications Technology (ICT) company, also based in Rwanda, where, among other things, he maintains the ICT infrastructure of HVP Gatagara Orthopedic and Rehabilitation Hospital. In 2019, he successfully published his Master’s degree thesis which focused on Assistive Technology for People with Disabilities, particularly visual impairment.

Jean-Claude’s parents were refugees in South Kivu, Democratic Republic of the Congo, and this is where he was born. As a baby, he received no vaccinations as there were none available for refugees, and as he grew, it was discovered that there was no mobility in his legs and right arm. He used crutches until the end of secondary school when he received medical assistance (orthopedic and rehabilitation) which allowed him to walk independently.  After completing his Bachelor’s Degree, he returned to the place that gifted him his mobility, HVP Gatagara, where he is now dedicating his life to helping others who are disabled.

This is Jean Claude’s story:

I was born ‘different’ and going to school was not easy.  My memories during most of my primary school years in the Congo consists of students all crowding around during break, looking and laughing at me, because I was ‘different’. The teachers laughed too and also the people in the refugee camp where I lived. My school was far away from the refugee camp but my brother was determined to go to school so he carried me on his back over the almost 7km every day, both ways, because I was unable to walk.

After the 1994 genocide against the Tutsi, my family returned to Rwanda and I completed my primary school there. As a person with a disability, I was sent to the HVP Gatagara Orthopedic and Rehabilitation Hospital and attended its special school. I felt very comfortable at this school because there were other children here, also with disabilities, and I was able to get medical treatment, orthopedic devices and start my rehabilitation. It was much easier for me in this place, although emotionally it was sad because my family abandoned me, forgetting about my existence and I continued to live as an orphan until I completed secondary school.

Outside of the school and Gatagara Center, the community only focused on my disability.  I was discouraged at every turn, with people telling me I would not complete and further my studies. I was always a good student and because of the special, caring education and self-confidence boost I got at HVP Gatagara, I was able to prove them wrong and complete my Bachelors and Masters degrees.  My only concern and challenge at that time were the lack of accessibility amenities and infrastructure at the places where I studied.

Although it was not easy during my primary school years and some of my college years, with students, instructors, the lack of caring environment and mind set of parents and the community into which I was  born, I persevered and did not let this dull my vison of what I wanted to accomplish. I received a bursary from the Government and attended the University of Rwanda, where I obtained a Bachelor’s Degree in Computer Science and Systems, then I continued on to the University of Kigali in their Science and Information Technology Master’s program, graduating December 6th, 2019.

I am a scout leader in Rwanda’s Scout Association. I represent special needs scouts as a volunteer for inclusion and diversity, and for the past 5 years, I have been an advocate for inclusion and rights of children and youth with disabilities, I mentor children with disabilities at school and home, and I am also a voice for improving accessibility for them.

Every day, many hours are spent at HVP Gatagara Hospital where there are a lot of patients with disabilities undergoing orthopedic and rehabilitation treatment, and children with disabilities attending school, like I did many years ago. Because I grew up at the Gatagara Center and was educated here, I know how to interact with the patients so my days are very fulfilling as I am able to make a difference in the lives of those I interact with daily. When I lived here, I thought I could never be a leader because of my disabilities, but now I know differently and I can share this insight with the people I meet here. Over time, I realized that anything is possible even if you have a disability, so I joined HVP Gatagara staff and discovered I too can make a direct contribution and help to promote the rights of peopl with disabilities.

Currently, my expertise in the field of Information and Communication Technology allows me to contribute to the education of children with disabilities. It also provides me the opportunity to assist with finding solutions to demonstrate that a high potential exists in Rwanda to dramatically improve the education of children with disabilities who are being raised at HVP Gatagara, and elsewhere in the country, and that a digitalized HVP Health Care service to align with the new technologies that exists is necessary.

HVP Gatagara

HVP Gatagara is a non-governmental organization, founded in 1960 in Gatagara, the “Hill of Hope.” It was the first and is still now the only center in Rwanda for inclusive and special education, medical care and re-integration into society of children and adults with disabilities. It is the only Orthopedic and Rehabilitation Hospital in the country. Today, HVP Gatagara is located in six Districts in Rwanda. Their work is expansive and includes a school for the Visually Impaired; Day Care Center and School for Children with Mental Disabilities; Hospital; Physiotherapy, Care for People with Disabilities, Orthopedic Surgery & Orthopedic Care, Occupational Therapy, Community-based Rehabilitation and research activities related to the provision of care, education and reintegration into society of persons with physical disabilities and the promotion of health, education and reintegration.

Government Assistance

The government of Rwanda has helped people with disabilities by creating policies which support them in order to facilitate social integration. They also helped to set up a National Council for People with Disabilities and they employ people with disabilities. The Government implemented a building accessibility program and also promotes and encourages sports for people with disabilities. However, they lack the skills required to implement all of the above programs. They are unable to get people with disabilities to participate socially like other citizens. They are unable to alter the mindset of families and communities about their perception of people with disabilities.  Negative opinions based on culture, society and personal stigma are still attached to people with disabilities, mainly because many of the Rwandan people are uneducated and not able to see beyond a person’s disability.

The life of people with disabilities in Rwanda

Overall, people with disabilities in Rwanda are not treated well. They are treated as though they have no rights and are beggars, a problem to their families and if they are fortunate to work, they are seen as a burden.

Sadly, they are not treated equally, even now that we have a National Union for People with Disabilities, a 13-member organization consisting of advocates for different types of disabilities in Rwanda representing our five categories of people with disabilities, namely: Physical, Hearing, Albinos, Little People and Intellectually Disabilities. The government policies are clear but there is a severe lack of advocates and resources to implement these policies and people with disabilities suffer as a result.

Not all have access to medical attention, because health care for people with disabilities are expensive. We have community-based health insurance for all Rwandans which helps, but this is not enough because for the disabled, their special needs go beyond what is basically provided.

They have access to education like other students, but schools are not accessible and there is a lack of adequate teachers for special education. The schools’ infrastructure is not adapted and assistive technology is very new in Rwanda, therefore not available to the majority of the disabled. This type of technology is necessary to ensure that no one who is disabled is left behind.

They have housing, but it is not accessible.

There is a high unemployment rate among people with disabilities because work places are not accessible in Rwanda.

Access to information and community environment are not conducive to mitigate the spread of the COVID-19 pandemic among people with disabilities.

Rwanda is developing its tourism services but the biggest issues are that it is not accessible for people with disabilities.

Public transportation is not accessible, Disability Awareness is lacking and there is a high number of social and community isolation as a result of the many limitations that exist in Rwanda for people with disabilities.

My hope for people with disabilities in Rwanda

My first hope is to have a government that will hear us.

I also hope Rwanda will develop organizational structures surrounding advocacy for children and youth with disabilities.

I hope for help for HVP Gatagara. Their infrastructure is very old as most were built before 1960 and an accessible, modern building for their Orthopedic and Rehabilitation Hospital, being the only specialized hospital for people with disabilities in Rwanda is urgently needed.  Currently, they cannot accommodate all of patients who need help, because of the lack of a modern building. Patients come from all over Rwanda and sometimes from Burundi, Congo but sadly they cannot be helped due to the facility limitations.   HVP Gatagara receives assistance from the Rwandan government to pay only some of their staff salary. Help is also received from UNDP and humanitarian support is received for some clinic materials, but much more is needed.

I hope for assistive technology for HVP Gatagara in their six school branches in the country. Fortunately, students with disabilities who attend these schools are fully funded by the Government of Rwanda, and the parents who can afford it, pays a little for school-feeding because HVP Gatagara is a boarding school.

I hope for assistive devices for people with disabilities. These are not affordable here in Rwanda and is not available from the government.

I hope for training in Disability Awareness and being taught appropriate skills from developed countries which we can implement in our context here in Rwanda. We want to learn from others – this is not available from our government.

I hope people with disabilities in Rwanda can have good health, improved well-being, reduced inequalities, respect and kind partnerships to help us to achieve these goals.

For more information, email:

HVP Gatagara: info@hvpgatagara.org

Director General Brother Kizito Misago kmisago@yahoo.fr

Mr. MBONIGABA Jean Claude (MSc.)

E-mail: mboni500@gmail.com

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