Despite having seen firsthand the struggles faced by a person with a visual impairment, it was only when I went to a “Dialogue in the Dark” exhibition – where the sighted are blindfolded and guided by the visually impaired – that I began to have an inkling of what it was really like.
I began to understand why my dad described losing his sight as “slow torture.”
The Dialogue in the Dark experience was life-changing, enlightening. It occurred to me that it could have done wonders in training health care personnel and policy-makers, but like many important things in society, it did not receive funding and subsequently closed down in South Africa.
I have been speaking and writing about disability and inclusion in a general way for a few years now, but I never really opened up about what drives my passion for improved health care, until recently. It’s a story that brings up a lot of emotion for me. The impact of disability is not just on an individual but on the family. The effects may be felt in terms of poverty, school attendance, economic strain (catastrophic health expenditure), emotional well-being and community stigma.
When I was around eight years old, I was oblivious to the point of being insensitive. A memory that is etched in my mind is when my dad began knocking into cupboards. I asked, “Dad, why are you knocking things?” to which he jovially replied, “I guess I have knock knees.” I could see the hurt in his eyes and it is a moment that I still feel guilty about today.
It was not until I was much older that I realized that was the beginning of a journey which would change his place in the world. People started to see him as his disability, or talk about him in the third person or even past him – “He can’t see” – or limit their conversations to, “How is your eyesight now?” If they only knew the rich conversations they were missing. My dad is truly the most brilliant mind – passionate about humanity – that I have ever come across.
I recall how he would put that rigid contact lens into his eye and each time he did, it was painful both to him and to those who watched. I saw how his eye would become red, but he kept the contact lens in because he was desperate to see.
I can’t remember the exact moment I took his hand, but I was the first of my siblings to do so. At the time, we did not know about rehabilitation of visually impaired persons, but I figured out how to guide my dad: “take a step… there’s a bump… we’re going downhill now… the chair is behind you.”
It wasn’t until I got to university and volunteered at the disability unit that I learned about assistive devices, like a magnifying glass for reading. We then made an appointment for my dad at a centre with a variety of devices. It was emotional for me to see everything that was available, although I always hid it. The reality was that the cost of these devices began at $500, and although there were so many which could help my dad, we could only afford one for reading.
My father’s medical journey, coupled with a debilitating public health care system in South Africa, gave me first-hand insight into how health facilities, especially in low and middle-income countries, can be inaccessible. Entering the third largest hospital in the world, SA’s Chris Hani Baragwanath, is next to impossible for a differently-abled person: from not being able to access transportation to the hospital, to having no navigational assistance at the facility itself; untrained, sometimes uncommunicative staff; forms to be filled out; and packaging of medication which does not cater to the visually impaired. If disabled washrooms are available, they are designed for wheelchair users. With little assistance from staff, I would have to aid my father in a male washroom, or hope that somehow he find his way around by himself.
These sorts of experiences extend to a wide-range of disabilities. I recently facilitated a community dialogue where a patient explained:
“I can’t go to the clinic which is so near to my home. I have crutches but I am not in a wheelchair, so they won’t allow us to park in the disabled parking bay. You can see I am disabled, but the security won’t allow it. So often we have to drive to another hospital.” I encountered a similar experience at a private facility recently, and it left me feeling angry and helpless.
The reality is that for the vulnerable, our health systems continue to leave many behind.
*Opinions expressed are those of the offer and not necessarily of Southern African AIDS Trust
Shakira Choonara, PhD, is Regional advocacy officer, Southern African AIDS Trust in Johannesburg, South Africa. In March 2017, she was chosen as Woman of the Year in Health Care as part of the Woman of Stature awards in South Africa. On October 29 she was a panelist at the Canadian Conference on Global Health organized by the Canadian Society for International Health (CSIH).
By Shakira Choonara, Regional advocacy officer, Southern African AIDS Trust (Johannesburg, South Africa)