Retina Africa Foundation: Fighting the stigma against blindness

Dr. Chibueze Anugwo is fighting the social stigma attached to the blind and the deaf in Nigeria by raising awareness.

by Nikhil Sreekandan

Dr. Anugwo, the founder of Retina Foundation, aims to fight the stigma against blindness. © RAF

In the final year of medical school, during his internship, Dr. Chibueze Anugwo’s vision started blurring. He was diagnosed with Retinitis Pigmentosa, a degenerative condition that starts from birth but manifests only later on in life and which, as of now, does not have a cure.

After struggling over a transitional period of 10 years which rendered him completely blind, Chibueze fought back. Today, he is the founder of Retina Africa Foundation, an organisation on a mission to spread awareness about blindness and working towards early detection and prevention in kids.

Here, Dr. Chibueze Anugwo talks about his homeland of Nigeria, its stigma around the blind and the deaf, and how he is fighting the lone battle to prevent his fate befalling another due to lack of awareness.

INKLINE: To slowly lose eyesight over a period of time, most people won’t even be able to fathom what that must be like. Could you talk a bit about it?

Dr. Chibueze Anugwo:  That is true. It is not easy to watch on helplessly as you go blind over a period of about five to 10 years. What was even more difficult was to watch my future as a medical doctor disappearing along with it, without any intervention in sight. That transitional period of 10 years was a nightmare.

I became withdrawn and depressed, with suicidal thoughts and suicidal ideation but unable to commit the act, probably because I lacked the willpower to do it. But today I am glad for not doing that.

Being from Africa, and Nigeria in particular, I knew that my future was finished as there is no opportunity for the blind in this country. In Nigeria, about 99 percent of the blind are beggars and of the less than one percent that are educated, half of them are unemployed since they don’t have anyone to rely on who can secure employment for them.

But, I was someone who was brought up to believe in myself, to believe in teamwork and in the power of problem-solving. I don’t know how I managed to find a positive frame of mind but I decided that irrespective of people’s perception of a blind man in Africa, I could still do something with my medical knowledge that could benefit my community.

Hence, I decided to set up Retina Africa Foundation, an organisation that tackles most of the challenges associated with blindness and deafness in the life of a growing child.

I: There is a stigma about blind people in Africa. Why do you think that is?

C: The blind in Africa are regarded as people without any future, who have nothing to contribute to the society and who are destined to become beggars. They have no shelter, they are isolated and discriminated against, and the majority are locked indoors to prevent them from coming in contact with the community as they are assumed to be a symbol of shame to the family.

Dr Chibueze Anugwo at a school in his community. © RAF

The rejection, isolation, and discrimination of the blind in Africa stem from cultural, religious, and superstitious practices of our forefathers when people with physical challenges were thrown into the evil forest as a way of eliminating them from society. But, in the new Africa, with the abolishment of the evil forest, a modern evil forest has emerged – one of isolation, lack of education, and discrimination. Hence, the destiny of a blind man in Africa is begging on the street.

To cite a personal anecdote, I was told this by a staff at the Ministry of Education when I went to seek approval for my program for schools: “You say you want to prevent blindness from these children, how come you haven’t prevented yours?”

I: Could you tell us a bit about the work that the Retina Africa Foundation (RAF) does on a regular basis?

C: Retina Africa Foundation is a community-oriented organisation which aims at health education, awareness creation, and the early detection and prevention of diseases in the community with a primary emphasis on visual and auditory impairment, and equally providing an informed solution for non-manageable diseases.

We work towards preventing the preventable causes of blindness and deafness whilst prolonging the onset time of the non-preventable causes. We aim at debunking myths, superstitions, and cultural and religious beliefs surrounding diseases and ultimately to reduce the distance between the community and clinical medicine.

It is our mission to reduce obstacles which hinder healthy human development. Currently, we are working to detect early-in-life visual or auditory impairment that is sight-threatening or which may impede a child’s ability to function at his or her optimal best.

To create awareness on the causes of blindness and deafness and to offer management options to parents of affected individuals and following up their rate of compliance. We teach the children about the power of education and how to develop proper reading and listening skills, and linking it to good vision and good hearing.

I: How do you fund RAF? Especially when you conduct early detection tests etc.?

C: I am currently funding RAF with my personal funds via the contribution from my friends and family members. This contribution is actually meant for my feeding, but because of the love I have for children and education, and not wanting any child to suffer the same fate, I have to sacrifice a part of this monthly contribution for this program.

I: RAF works within the rural region of Owerri West, right? What has been your impact so far in terms of awareness?

C: Yes, it is amazing and disturbing at the same time. During our awareness creation program, we have been able to conscientize parents that blindness is not a curse from the gods or an ailment afflicted on the individual by enemies but by simple diseases such as muscles, febrile convulsion, glaucoma etc. We have been able to share concept letters to about 10,000 parents of which 3,115 signed the concept letters and their children were examined.

Spreading and creating awareness. © RAF

Of these 3,115 learners, 967 were found to have one abnormal visual finding or the other ranging from refractive error, suspicious optic disc to glaucoma and three children have pathological myopia.

Those with refractory error were reoriented in their sitting position in order to assist them to improve their academic performance. All the children have been registered with our organisation for follow up and are equally referred to the hospital via their parents.

I: What are the future plans for RAF?

C: My future plans for RAF is for it to be an international organisation recognised throughout Africa and the world at large and a forerunner on early detection of visual and auditory impairment for preschool age children. This will assist us to prevent the preventable causes of blindness or deafness and prolonging the onset time of the non-preventable causes. The organisation also aims to reduce the psychological trauma that people go through during the transitional period of being fully sighted to being blind, so we can help prepare the individual for the future ahead.

I: What advice do you have for other blind people in Africa and around the world?

C: Be positive. Believe in yourself. Work on yourself before you face the world. Never ask the question, “Why me?” Because if not you who do you wish it to be? To accept and understand that nature will not give you a challenge you can not overcome.

I want them to know that we are a special kind of people with a special skill. And, most importantly, let’s not lose hope. Ever.

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