Beyond Sight — Seeing with Your Whole Self

In the quest to find out how Persons With Disability experience living with people who don’t, the next place I went to in Southernwood is called REHAB here in East London. It’s full name—The Association for the Rehabilitation of Persons with Disability. This is a much needed NGO that helps people living with sight, mental and physical disabilities. It has quite a few programmes, and it would be impossible to cover them all.

In this piece, it's the vision impairment tier that I choose to exclusively focus on.

Mental and physical disabilities will follow as articles that stand alone but form part of a series on disabilities and conditions that people within our communities have to contend with as lived experiences.

Those born blind tend to have their other senses sharpened as they grow. If you’ve been born with sight though and lose it as an adult, it’s extremely hard to adapt. It means a lot of things - it means a complete re-wiring of the brain and completely new ways of doing things.

The psychosocial aspect of rehabilitation is an in-house speciality of REHAB. Clients have access to social workers who use different forms of counselling depending, of course, on the needs of the clients.

REHAB focuses on two types of cases where people are either born with blindness or develop visual impairment at some point in their lives. Providing the services of Orientation and Mobility Specialists (O&M) is an essential and crucial part of the work, to help them to adapt, achieve some independence and live productive lives.

These specialists train people on how to go through their lives as independently as they can possibly get. They train them on the use of the white cane. They teach them to cook, make a cup of tea, their own beds, wash laundry, iron and all the other daily tasks. They help them learn how to hone in on their other senses, the importance of which can’t be overstated.

Visually impaired people can go anywhere they have or want to. It turns out, blind people can live on their own. I’ve never even thought that such a thing was possible. But of course, naturally, every individual case is different and treated as such.

"I suppose it all goes down with practice. I just need to adapt. I just need to trust, let go of the fear. I was a very independent woman. Very much independent, very much in control, so now I have to give that up. So it’s a little bit difficult for me to give that up and trust that somebody is not leading me to danger."

In Yolisa Ernest’s own words.

Glaucoma led to an irreversible blindness a year and a month ago, and she now has to learn how to live with this great upheaval in the world. But as she spoke, and I tried to listen without my own mind going off in a hundred different directions, I realised that Yolisa first has to learn to live in her own world. The world in which the light has closed shut all its avenues from her. I cannot begin to imagine what that must feel like. It’s all still relatively new.

We’re sitting in the Lathitha Computer Literacy Programme class with one other student, Shama Neermul and their teacher Mr Madliki.

I had asked to come in as an observer to their computer lab at the REHAB premises in East London. To see them work and access the computer is quite impressive because it looks extremely hard, particularly for people who had vision before.

 

“I’m visually impaired, I have a… this is very difficult, when a person is blind, is blind. I’m classified as blind because I cannot see finer details. I can see your outline, I can see your colour. I was a teacher by the way, and I did it with my disability. I went to university and I had my visual impairment, but I had to lie to get into the system because it was still under apartheid in 1984. And they were very prejudiced against colour and disability. Fortunately, back then, I passed their screenings because I was still fine.”

Says Shama Neermul who taught High School English for three and a half decades. She’s been steadily going blind over the years from a condition called Macular Degeneration.

Throughout her career, Shama has been able to teach matric students until three years ago when her sight badly deteriorated. She was using a magnifying glass to mark her students' work. Because it’s degenerative, now when she reads, she can’t see some letters. She says in her case, it’s a genetic condition but things like trauma, stress, diet and basic ignorance about the illness were things she could’ve definitely done without.

She fought hard to keep a job she loved in a system that was hell-bent on kicking her out. It goes without saying that she wanted to keep her livelihood. With an assistive low vision device, there’s no reason why she couldn’t have kept teaching. Between the education and social services departments, she tried to advocate for herself ...  to no avail. 35 years of teaching is a wealth of experience people along the chain of systems had no qualms letting go of so easily. What a waste! What a pity!

At my suggestion that she goes into teaching children with vision impairment, Yolisa told me something I didn’t know. Special Needs Schools are being done away within South Africa for mainstream classrooms. A law has already been passed. What I find disturbing is that, as far as they know, within the community of Persons with Disability, nothing like a referendum has been conducted to include them on this question of ‘inclusivity.’ The idea is grand but if it doesn’t come with grand practice then it remains just that— a grand idea for those who frame policy. No one else. What else is new?

With unemployment or dropping out of school that follows most people who experience vision impairment, perhaps it’s the psychological hardship of suddenly finding oneself at home, an unproductive member of society with choked dreams that is the hardest to come to terms with.

Mr Madliki went to a doctor when he noticed that vision in his left eye was cutting, seeing things in half. He was referred to an optometrist who prescribed single vision glasses. His vision worsened and back at the optometrist, he was further referred to an ophthalmologist.

His deteriorating vision was caused by Cytomegalovirus, commonly known as CMV, and he was told an eye surgery had to be performed on him. He still had some vision when he went into theatre, but he came out of it blind. We know from the last blog post that CMV can also cause deafness. After quite an ordeal of having had three eye operations, it sounds unbelievable that none of the people who were poking his eyes ever explained what exactly CMV is.

“I’d say I’m functionally blind because I can tell if there’s a light on or if you’ve opened your curtains or blinds. So, they say I’m functionally blind. I have light perception… 21 years ago, the doctor said my sight was gradually going to come back.

He says, but wanting a second opinion, he went to Cecilia Makiwane General Hospital, and after vigorous tests, the medical officer told him that he’ll never see again. His optic nerves were irreversibly damaged and he was referred to REHAB, a place he now works.

But I’m way ahead of the story now. Let’s go back to the beginning - his is a story of resilience, resolve and a spirit that refuses to break.

After going blind, sick of doing nothing but wait for his mother to come from work, he cleaned the house and went on trying things on his own. Some of the things like walking on his own without a cane, came as a result of unintended consequences. Someone snatched his cane and made a run for it whilst he was walking. He made use of his mind map, feeling the edge of the tar road and the gutter until he arrived at his destination. He tested his limits and boundaries and with that came the ability to hone and develop his other senses. He admits that he never sank into depression or low spirits after losing his sight. He had no trouble accepting that life had drastically changed and he had to get on with it. The only way was forward, not backward. Now and again in life, you come across people who make you understand some of the phrases and sayings that sound so clichéd, but Mr Madliki is living testimony that anything is truly possible.

A family man, with a wife and children who enjoy his cooking, baking and braais, he cleans, washes, irons, buys his own clothes, uses public transport with very minimal assistance. Three years into his blindness, he went to study with Optima College in Tswane at the South African Council for the Blind, where he graduated with flying colours, he unabashedly tells me. He did nothing but work hard when he got there.

His current work with REHAB started 10 years ago when they contacted him for an employment opportunity. Fast forward, he trained people on an access software NVDA- Non Visual Desktop Access.

“Nothing gives me more pleasure than helping people achieve what they thought they couldn’t. Hearing people say wow.

My life began after I went blind, I used to be shy about public speaking. Now I speak in public. I do everything I want to do, the only thing I really, truly miss is driving. Yhoo, I miss driving.”

Mr Madliki says. I find it incredible that right from when his world changed, he's managed to kick fear on it's backside and is living life like he never had before then.

Yolisa misses being busy, productive and independent. Shama misses teaching English and reading, but they both seem to be at the right place. I imagine rehabilitation, just like everything else in life is different for each of them. For the two ladies, it’s a relatively new road they are walking. They admit that a lot can still be improved at REHAB. But all the services are almost free of charge, and we know the struggles of NGO’s keeping the lights on. A lot can be done by the government and all of us put together.

“I wish I could find my own tribe. A community where I could feel a sense of belonging that comes with understanding what losing vision is like.”

Yolisa says.

How little most of us know about the struggles of others forced to survive in a world built entirely on the convenience of all our senses. I never stopped to think that the music played in most retail shops actually makes a blind person’s shopping experience extra hard until I spoke to all the wonderful people I’ve met at REHAB.

Once again, my heartfelt gratitude to everyone, especially Mr Madliki, Shama and Yolisa, who have been generous not only with their time, their kindness and patience but in sharing their stories as well. Which means, they also shared pieces of their souls or souls' journeys too.

It would be remiss of me to conclude without an expert’s answers on questions around Visual Impairment issues.

Dr Ravgee at the Cecilia Makiwane General Hospital’s Eye Clinic answers some questions on these.

My many thanks to him, he found time in the wee hours of the morning to respond and in so doing, help in the little steps we take to once again dispel ignorance.


1. What is your job and how long did it take you to be the specialist that you are?

I am a medical officer (GP) in Ophthalmology at Cecilia Makiwane hospital. I studied 5 years to get my medical degree and still need to complete a 5 year training programme in Ophthalmology to become a fully qualified specialist.

2. What does it entail?

My job revolves around examining the eye and managing pathology related to the eye. This may be either medical or surgical management. 

3. Who do patients typically see first for their eye issues and how does the chain of command progress? Does it stop with you?

Patients generally get seen at their local clinic or GP. We often also get referrals from optometrists. 

Depending on the disease process we find, we may refer to other medical specialties. 

4. Is it really possible for glaucoma to creep up on one, despite regular eye medical check-ups?

With regular eye checkups, it is possible to control glaucoma, if identified early.

5. What are the leading causes of blindness besides glaucoma?

The main causes of blindness in developing countries are cataracts and diabetic eye disease. 

6. In my interaction with Shama... she tried to describe macular degeneration, please explain for us in lay terms as  far as possible?

Your macular is the main focal point at the back of your eye where light focuses and takes this message to the brain for you to see. With degeneration there is basically damage to this area, which results in decreased vision.  

Could she really have kept her job as an English teacher with the use of an assistive low vision device?

• Depending on the type of macular degeneration and the extent of the visual impairment, this would determine whether she could still continue her job. 

• And in cases when it's hereditary, at which ages would it normally present?

• There is no specific age at which hereditary macular degeneration presents as there is a wide disease spectrum.

• How can we check for hereditary eye issues?

• Regular eye examinations can assist in diagnosing hereditary eye conditions.

7. Can blindness start at any age? If so, what are the top 3 causes?

Yes, it can start at any age. Three leading causes are; Cataracts, Glaucoma, Diabetic Eye Disease. 

8. Is there a general good eye practice or hygiene that people can follow?

In this day and age with advancing technology and hence increased screen time, we need to be mindful of excess screen time. 

9. What is the one important thing you wish people knew about their gift of sight and how to care for the apparatus?

Your eyes are very precious organs in the body and are extremely difficult to repair once damaged, hence we need to care for them. 

10. What are the first tell tales that something will or can lead to blindness or problems?

Patients who experience flashes and floaters should seek medical attention immediately. Some patients my also describe a curtain in their vision. These are emergencies and should be attended to promptly. 

11. Can anyone keep their job with the use of assistive low vision devices in cases where blindness is not near complete?

In a government setting, we do not see many of these cases due to our patient demographic. We would normally refer such patients to our rehab unit for further assistance. 

12. Are there any exercises one can do to strengthen their eyes?

 There are no real exercises to strengthen your eyes, but if you struggle to see, I would recommend an eye examination with possible need for glasses if determined by the tests.

13. What else besides carrots and squashes are good food for the eyes?

Green leafy vegetables and citrus fruits are sufficient to ensure good eye health.

14. If I feel the frequent need to keep washing my eyes with water, should I be worried?

This is not a typical complaint that we see often, but I would suggest having an eye examination to rule out any pathology such as dry eye disease.  

15. What possible biological reason is there for tears to be salty?

Tears may be salty because they contain electrolytes. 

16. What technological promises now exist to help people recover their lost ability to see the world around them?

Ophthalmology has grown tremendously over the years with various machines to improve patients' visual outcomes and assisting us in diagnosis and management. Of interest, AI is slowly starting to be used to assess images obtained by the new equipment.

17. In EL, for people who lose their sight for whatever reason, what other public resources or centres are there besides REHAB that they can access?

In the public sector, specific to Cecilia Makiwane hospital, we refer our patients to our occupational therapists for further assistance. Other than these resources, we are very limited. 

18. What's the best part of your job?

The best part of my job is assisting young children with restoring their vision after sustaining injuries to the eye.