Over time, disability has become a structural factor influencing the quality of life, access to opportunities and health outcomes of those who are affected. According to the World Health Organization (WHO), over 1.3 billion or one in six people, globally, experience a significant disability. The WHO’s Global Report on Health Equity for persons with Disabilities revealed that they face a greater exposure to health emergencies and perpetual health inequities than the general population (WHO,2022).

The term "disability” encompasses any physical, mental, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or to participate in daily activities and interactions. It is also described as impairment combined with barriers.

Jeannette Uwimana has a hearing and speaking disability. She was recognized after competing in Miss Rwanda and becoming the elected Miss Rwanda Innovation 2022. She narrates her experiences:

"Going to the hospital alone is always hard. I always have to go with my mother or my siblings, which often leads to high transport costs. The few times that I went on my own, it was very challenging as I had to sit in line and couldn’t know when it was my turn to enter the consultation room.”

Recognizing this issue, the University of Global Health Equity (UGHE) takes an equity-centered approach to health education, training the next generation of global health professionals to address the complex yet dynamic forces influencing unequitable access to healthcare.

One of our initiatives includes panel discussions on healthcare equity. The recent one on disability inclusion was held by the Department of Community Health and Social Medicine. This platform allowed medical students to learn from the lived experiences of persons with disabilities – like Jeanette Uwimana and the challenges they face in accessing health services. Other panelists were Mr. Samuel Munana the Chief of party at Juarez and Associates and former Executive Director of the Rwanda National Union of the Deaf (RNUD); and Ms. Claudine Humure the Senior Program and Development Prosthetist-Orthotist for the MIT O&P project in Sierra Leonne.

Personal journeys and systemic barriers

The panelists shared compelling stories of resilience and determination, with a highlight on key aspects of health and disability. Ms. Claudine recounted her journey, marked by tragedy and triumph. After losing her parents during the 1994 Genocide against the Tutsi in Rwanda, she lived in an orphanage until the age of 12 when she was diagnosed with bone cancer. Sadly, the amputation of her leg to save her life left her with a physical disability.

Despite this, with the support from Partners in Health, Claudine was able to access quality treatment in the U.S and resume her studies in Rwanda with a prothesis. When her prothesis broke, she encountered significant challenges in getting it repaired, exposing the limited resources and services available to support amputees in Rwanda. This experience inspired her to pursue an education in prosthetics and orthotics. Today, she uses her expertise to train young students in Sierra Leonne on the development of prosthetic and orthotic devices, with the ambition of bringing these essential services to Rwanda in the future.

Access to specialized services tailored to individual needs is crucial for persons with physical disabilities. For Claudine, this meant access to expert prosthetic services. For those with hearing disabilities, it could involve hearing aids, while individuals with visual impairments may require tools such as tactile aids. However, limited or nonexistent access to these essential services and equipment remains a significant obstacle to achieving positive health outcomes for many individuals.

Ms. Jeannette discussed the barriers faced by people with hearing disability, which include limited access to education, healthcare services, etc.

"I started school at the age of eight because my parents couldn’t find a suitable school for me,” she said.

She highlighted that many people like herself struggle to learn Kinyarwanda due to communication barriers both at home and in school. In addition, they are also likely to be misdiagnosed and to get improper treatments due to the fact that healthcare providers often lack sign language skills. Ms. Jeannette added that sexual and reproductive health information often excludes them.

Mr. Samuel emphasized the enduring stigma faced by persons with disabilities, including isolation from families and communities. This social stigma may exacerbate poor health outcomes and contribute to mental health issues such as depression.

Opportunities for inclusion

Despite these challenges and barriers, the panelists emphasized that "disability is not inability.” Their personal and professional achievements demonstrate the potential for individuals with disabilities to thrive and create solutions for others when given adequate opportunities and support. Panelists also commended the Rwandan government’s efforts to promote disability inclusion and rights.

Ms. Claudine underlined the importance of interprofessional collaboration among healthcare providers to ensure a continuum of care.

"Surgeons need to understand what we do because we work with the patients after amputations. If the amputation is not done right, the patient may struggle to use the devices that we create,” she explained.

Mr. Samuel stressed the need to involve people with disabilities in planning, research, and program implementation.

"People with disabilities should be included in planning, research and implementation of programs. If we do this, I am confident that we will achieve inclusiveness in health services,” he said.

Reflections and aspirations

The discussion resonated deeply with the UGHE students. Umuhire Sadie, a second-year medical student, shared her insights after the discussion.

"From this discussion, I realized the importance of understanding the challenges faced by persons with disabilities, especially with regards to accessing healthcare services. As a future healthcare provider, I aspire to be an advocate and an ally for persons with disabilities.” Umuhire Sadie says.

"From the anecdotes of our panelists, I developed a strong desire to participate in the disability inclusion movement and to continue to learn different ways through which these barriers can be bridged. One of the ways is learning sign language to address the communication barrier for deaf patients.” She added.

The panel discussion highlighted the importance of addressing systematic barriers to healthcare for persons with disabilities. By fostering dialogue, building interprofessional collaboration, and amplifying the voices of those directly affected, we can work towards a more inclusive and equitable healthcare system for all.

The writer is a faculty member at the University of Global Health Equity (UGHE) in the Department of community health and Social Medicine. She specializes in global public health and community engagement.