Voices: Queen E. Seketi

PhD candidate at the University of Zambia, focusing on disability inclusion in the COVID-19 Response Strategy in Zambia

What is your current role working on disability and health?

As a researcher, my role is to contribute to evidence on disability and health. Based on thematic areas and recommendations which may arise, policy makers and other strategic partners may use this evidence base to make decisions regarding disability and engage more meaningfully.

“In my opinion, a person’s impairment may get more attention than a general health condition. In extreme cases of missed/poor diagnosis, they are referred to specialist service before ruling out other clinical conditions ”

In your opinion/experience, what are some of the main barriers for people with disabilities in accessing health?

Access barriers for people with disabilities in health are related to behaviours, perceptions, and assumptions of the health service providers and people with disabilities and their families. In my opinion, a person’s impairment may get more attention than a general health condition. In extreme cases of missed/poor diagnosis, they are referred to specialist service before ruling out other clinical conditions. Barriers are also around some policies, procedures, and practices. For example, policies that don’t give health workers enough time to provide a service for people with intellectual and mental health disabilities or having limited accessible transportation.

Regarding the physical environment, there have been attempts to have universal design in health infrastructure, but many older buildings and other health centres are still largely inaccessible. For instance, steps at the entrance, narrow corridors and doorways, high examination beds, and inaccessible toilets. Some hospitals may have elevators either constantly out of service or far from the clinic.

In terms of communication and information barriers, people with sensory impairments and learning difficulties may find it difficult to access healthcare. Most healthcare providers do not know sign language. It is difficult to simplify medical language to cater for people with intellectual impairments. In other instances, people with disabilities are unable to express themselves and may have to do so through another person- their caregiver who may not accurately voice their health concerns. Health education materials are also not readily available in the correct formats such as braille. Lastly but not the least, other barriers could be through inadequate access to technology for different types of impairments. The prices of most assistive devices are higher than the incomes of many people with disabilities and their household incomes. In other instances, new technologies and/ or providers don’t reach rural and peri-urban areas.

“The ministry ought to ensure universal design and training of health care workers in various skills […] Access is a right for people with disabilities, a human right, and we shouldn’t make it look like we are doing people a favour”

What should your Minister of Health know about these barriers? What should they do to address this issue?

I believe the Minister of health is aware of disability and health matters because of many years of engaging in international processes. The Disability Act No 6 of 2012 and the obligations it outlines makes it clear that disability and health is a recognized issue. People with disabilities are engaged in advocacy roles, so there is need to continually understand and appropriately engage the disability community on different health matters in achieving the idea of “leaving no one behind”.

Barrier removal should be planned for and implemented now rather than later. The ministry of health is trying, but there is need to continually question ourselves on reducing access barriers and deliver health for all, albeit incrementally. The ministry ought to ensure universal design and training of health care workers in various skills. Even if they start with a small group, so that when they are coming out of medical school, they will have this extra skill that will help them provide services to all people regardless of their disability status.

Although there aren’t enough resources at household and national levels to accommodate the many health technology needs of persons with disabilities, more partnerships are needed, to ensure that technology that is required for people with disabilities is delivered and spending beyond certain levels, catastrophic health expenditures, are averted. There is need to invest in research on disability and health. Additionally, data disaggregation by disability in routinely collected data needs to be done. We need to understand barriers to and facilitators of access to healthcare for people with disabilities. Access is a right for people with disabilities, a human right, and we shouldn’t make it look like we are doing people a favour.

If you could change one thing about health care for people with disabilities, what would it be?

That is a difficult question, because usually we have a “basket of things”. I think I would want to walk into any health center and access the service that I want, be it assistive device or just for general health care. Everything in one health center, one stop shop. I know that we hide behind using resources efficiently but at the end of the day how efficient are you if your services are scattered.

“There are great people out there that have knowledge and skills. We seem to disregard them, like they do not exist. But they do exist, and they have great ideas”

What are you hopeful about disability inclusion in health going forward?

To leave no one behind, we must challenge ourselves to get there, by ensuring people that have a need for specialist or general health services are catered for. I’m hopeful that eventually we will get better and not hide behind “COVID-19 has drawn us backwards”. I am hopeful that there will be more linkages, not just in terms of what we traditionally view as ways of dealing with disability where we just look at people with disabilities as people that need help but see them as the solution as well. There are great people out there that have knowledge and skills. We seem to disregard them, like they do not exist. But they do exist, and they have great ideas.

What has COVID-19 shown and/or changed for disability inclusion in health?

I think that we are still learning. Some of the learning points are that, to intervene in solving problems of pandemic proportions, everybody needs to be involved in any way that they can. So, if you look at the way disability matters were previously handled, if it doesn’t concern you, you don’t have a role to play, but if we can draw lessons from COVID-19 to say it affects us all, then it energises us all to want to do more.