Part & Parcel: Listening to People with Disabilities to Ensure Healthy Lives for All

Goal three of the 2030 Agenda for Sustainable Development calls to “ensure healthy lives and promote well-being for all at all ages.” To achieve that goal, we must work to ensure everyone has access to high-quality, affordable, and effective healthcare services—this means focusing not only on reaching hard-to-reach groups, such as people with disabilities, but making sure they are invited into conversations about designing health solutions from the very beginning.

People living with disabilities face many barriers when it comes to accessing healthcare, including accessibility and availability of information, accessibility of facility infrastructure, limitations on insurance coverage, lack of training for healthcare providers, and attitudes and stigmas surrounding disability from healthcare providers and the general public. Today, there are more than 4 million Tanzanians living with a disability.

During a panel, Diversity, Solidarity, and Action for Social Justice in Health: Keys to the SDGs, at the Women and Girls Africa Summit 2020 EngenderHealth’s President and CEO, Traci L. Baird, spoke with Fredrick Msigallah, Advocacy Officer from Comprehensive Community Based Rehabilitation In Tanzania (CCBRT), about the importance of making sure people with disabilities are not only invited to the table for discussion, but deeply and actively listened to and involved at every level of care.

When talking about who needs to be at the table and how we can ensure they have an active role in discussions, Fredrick explains, “We have to put people with disabilities at the center of the discussion. People with disabilities know better their needs and the challenges they face, someone should not be deciding on their behalf. They should be part and parcel of the discussion if we are developing a program to ensure that they are involved from the very beginning stage of designing the program, implementing the program, and monitoring and evaluating the program. People with disabilities know the barriers to information, barriers to participation, and barriers to program development. We need to address the barriers.”

And we need to go beyond just listening, we need to diversify the medical field. Fredrick said, “Different actors need to be at the table to ensure that the needs of diverse populations are taken into consideration. To me diversity means ensuring that people with all backgrounds, with all abilities, with all ethnicities perspectives are adequately represented in the medical field. It is about providing the best possible care for the variety of people by enhancing the variety of providers.”

When discussing the main challenges people with disabilities face when trying to access healthcare information and services and how those challenges can be addressed Fredrick explains, “We are building the capacity of people with disabilities themselves to first understand their rights to health and other rights, but also to engage with the relevant policymakers and decision-makers to lobby and advocate for their rights and representation. We are also creating opportunities—workshops, meetings—whereby we engage with healthcare providers and professionals and people with disabilities so that the healthcare providers hear the needs of people with disabilities and the way they can address them in their programs. Also, we train healthcare providers on how to provide disability-inclusive services. We are also advocating for improvement of infrastructure for healthcare services. You will find that many healthcare facilities, particularly in countries in Africa, are not accessible for people with disabilities, so what we are doing is lobbying for improvements of those infrastructures.”

EngenderHealth has partnered with Comprehensive Community Based Rehabilitation in Tanzania (CCBRT) and other organizations to ensure that our Scaling Up Family Planning Program, funded by the UK’s Foreign, Commonwealth & Development Office, reaches Tanzania’s most vulnerable and hard-to-reach populations—particularly young people and people living with disabilities. The program utilizes various models to support outreach services to a wider population.

“With regards to information, we are developing information in accessible formats. Currently we are implementing a program, the Scaling Up Family Planning Program, and in this program one of the aspects to ensure that people with disabilities have access to information. We are providing information in accessible formats—in braille, in sign language, and in large print so that people with disabilities can also know about their health-related issues,” Fredrick says.

Beyond working with individuals, health facilities, and organizations, Fredrick stresses how important it is to raise awareness among policymakers and decision-makers to change the policies, laws, and guidelines that impact the lives of people with disabilities.

To address the barriers to high-quality, affordable, and effective healthcare information and services faced by people living with disabilities it is important to work at every level—individual, healthcare system, organizational, central, and national. People with disabilities are an extremely diverse population with different needs, making it even more crucial to invite more voices to the table and involve them in every aspect of care.

The only way to achieve health equity is to make sure, like Fredrick says, that in “everything we do, we need to make sure that people with disabilities are equally benefiting as those without disabilities. To make sure that we build a society that is inclusive for everybody.”