Life under lockdown for people with disabilities
22 May 2020
By Biénne Huisman for SPOTLIGHT
Covid-19 and South Africa’s lockdown have impacted the lives of people with disabilities in ways that may not be immediately obvious. Biénne Huisman spoke to three people with different disabilities about how their lives have changed.
For Jemima Maotoe Covid-19 poses a major disruption, stemming from the ignorance and fear of others. When the 44-year-old grandmother and administration specialist uses public transport, she says fellow passengers are loath to help her for fear of contracting the virus by touching her wheelchair.
“My mobility has been really affected by coronavirus,” says Maotoe. “People are not well informed. It is so hard to convey to people that they won’t get corona from touching my wheelchair. I show them I am sanitising my wheels, my chair. You know, when I use taxis I depend on people, fellow passengers or the driver to upload and offload me. But they don’t want to touch my chair. Even in the shop, I see fear in people’s eyes.”
Maotoe was born without lower limbs in Irene, Pretoria. She attended Tlamelang Special School in Mafikeng and Filadelfia Secondary School in Soshanguve, north of Pretoria. From 2014 until 2019, she served as North Gauteng facilitator of QASA (QuadPara Association of South Africa), a non-profit organisation that lobbies for people with mobility impairments.
In June 2019, Maotoe started an internship with an engineering automation company ICR in Midrand, working as an administration specialist. “Mainly I was processing e-bay logistics,” she says. “It was nice working in a different field, very exciting.”
When lockdown kicked in, Maotoe had to stop working. She left the room she rented in Tembisa near her office to move back in with her family in Soshanguve. During lockdown she is still earning her monthly salary of R4,000. Maotoe is the sole breadwinner for a household of six that includes her 92-year-old mother, her three children aged 29, 23 and 7, and her two granddaughters, aged 7 and 3. She is busy divorcing her husband, who she says deserted her in 2011 without paying maintenance.
While Maotoe is speaking to Spotlight over the phone, children’s voices sound shrill in the background. She excuses herself, admonishing them in a hushed tone.
“Lockdown has been difficult,” she continues. “I’m the sole breadwinner. My mum is old and frail. I need to look after her. We are homeschooling the little ones. I mean, it’s not easy. School at home is not the same. But we’re trying our best to teach them.”
Who goes shopping for the household? “Normally I go shopping with my second daughter,” says Maotoe. “We stay next to the plaza. People with disabilities go to the front of the queue, so it is easier.” She has a motorised wheelchair, which was donated to her.
Meanwhile, Covid-19 safeguarding is posing a major financial strain. “Most people buy one bottle of hand sanitiser, that will last them so long,” says Maotoe. “We have to buy twice as much to sanitise my chair, too. It is so much responsibility. We’ve had to adapt our lifestyle quickly.”
Despite the challenges, Maotoe is grateful. “I made a choice a long time ago not to let my disability get in my way,” she says. “I had a lot of challenges growing up. These negative things were hindering me from reaching the level I wanted to reach in life. So, I learned to live with what I have. My children, well, their love carries me. They see me not as someone with a disability, but as their mother. A lot of people with disabilities are rejected. The world out there is cruel. I had to raise my children to be strong. They would come back from school crying, because children had taunted them about having a disabled mother. Yes, my children never rejected or mocked me, and for that I am so grateful.”
For the most part, Maotoe considers Covid-19 a big setback in her progress to live a productive life. “So for me, I see corona as a setback for being integrated in society. People should be more aware, they should be more open to being educated.”
She hopes to return to her job once Gauteng reaches lockdown Level 2.
“I am still keeping my room in Thembisa,” she says. “With the hope that I will be going back to work. For it is hard to find accommodation, especially if you are a wheelchair user. I struggled to find a place until a kind lady gave me this room. It is expensive to keep paying, but ICR is giving me an accommodation allowance, so I can afford it. My company promised I will go back to work, once this settles.”
Simon Ndaba was born deaf in the Free State town of Harrismith.
He attended Bartimea School for the Deaf and Blind in Thaba ’Nchu. Then he studied art at Motheo College in Bloemfontein, completing his N6 certification in painting, drawing, ceramics, computer graphics, and jewellery. After working as a South African Sign Language (SASL) book illustrator at the University of the Free State, his journey led to the Boland town of Worcester, where he has worked as an SASL trainer at the National Institute of the Deaf (NID) for the past six years.
Ndaba is in lockdown with his fiancée and nine-month-old son in the staff quarters on the NID campus. Responding to questions from Spotlight, the 37-year-old arts enthusiast relays how Covid-19 is hampering communication for those hard of hearing.
“Personally, communication is an even greater challenge,” he says. “Many businesses resort to phone calls only, and upon visiting open shops it is impossible to lip-read when people wear masks. Masks are a great barrier to communication for most deaf people. To address the challenge of communication, I find my only recourse is to use a writing pad and to write to and fro,” he says.
“If people wear see-through masks, this eliminates the problem. Sign language interpreters are invaluable in any circumstance where communication is vital, such as a doctor’s appointment.”
Spotlight contacted Ndaba via Hannerie Swart, NID development manager, who relayed emailed questions to him.
Swart explained that the interview had been a challenge, as Ndaba’s first language is SASL, and not written English. “He struggles to read and communicate in written English,” she says. “Deaf children do not have the benefit of natural and timely language acquisition, therefore their language and vocabulary skills are impacted. Thus, the reason for his short answers.”
Swart noted the challenges posed by medical consultations for hard-of-hearing people.
“The medical challenges deaf people experience are usually due to the fact that hospitals, doctors and nurses don’t know or understand sign language. The deaf patient therefore needs to rely on an interpreter, which isn’t always possible due to availability or cost. It’s also a big violation of their privacy and perhaps even embarrassing when they need to convey medical or confidential information to an interpreter as well. They also can’t make a doctor’s appointment without having to ask someone to call on their behalf. Hospitals and doctor’s rooms usually aren’t deaf-friendly. They call patients on an intercom and sometimes forget the patient is deaf. We’ve had cases where a deaf person had missed his appointment, because they called him on the intercom even though his file indicated he was deaf.”
Ndaba recounts trouble-shooting during a visit to the bank. “I needed to go to the bank to find out about payments. I was told that I needed to use the phone to call some office, but of course, I couldn’t. The bank personnel had to assist. This is a challenge regardless of lockdown levels.”
At the NID campus, translucent face shields are worn instead of masks, allowing reading of people’s lips and facial expressions.
Elaborating on his job at NID, Ndaba says: “I teach staff at the National Institute for the Deaf. I am also involved with material development (creating sign language DVDs, posters, and training documents). South African Sign Language is a marginalised language in South Africa and has not received much support from government, in the past.”
Meanwhile, a Muizenberg man, inspired by his cousin who is hard of hearing, is making fashionable lip-reading masks at R85 each.
Roy Abbott of Goodwood in Cape Town heads up the Tygerberg Association of the Blind. His staff of eight weave and distribute wicker baskets, linen chests and baby cradles. Now, under lockdown, Abbott has had to impose a 50% salary cut on all his staff.
“Including me, we have eight people,” says Abbott, speaking to Spotlight via a video call. “Five of us are blind. We have two blind ladies who work from home. So, my driver will take the work to them and collect it from them again. Obviously, our driver is not blind, neither is the carpenter. Then we have a staff member who had polio, he does all the repairs.”
Abbott says he is dipping into the organisation’s reserves to pay salaries and that these savings will run out in June. “Like everybody, we’ve had a loss of income,” he says. “By June we will have to make another plan.”
Abbott says that so far all his staff are safe under lockdown.
“I spoke to one of my staff members in Delft this morning. He lives alone. All he can do is listen to the television. Fortunately for him, the shopping centre – the Shoprite – is not too far from where he lives. So, what he does is once or twice a week he takes his basket and his long cane. And then he goes out there and the assistants help him. All the people there know him so they look out for him.
“Sometimes my employees use Dial-a-Ride, for trips to the shopping centre or the clinic in Parow. I don’t know anyone who has contracted the virus. I tell my staff all the time, please rather stay at home. We’re all in this situation together.”
Despite responsibility weighing heavy on his shoulders, the 69-year-old businessman’s face is jovial. He is in lockdown with his wife, their son and his wife and their seven-week-old baby. During the interview, Abbott angles his phone to show his guide dog Georgia, a golden labrador, at his feet.
“Yes, meet Georgia,” he says. “This dog is one of the family, she’s spoiled. Georgia is old, she is 11 now. The problem is she was going to retire this year, but because of the lockdown she could not. But she is still fit. She walks fast. In the mornings during the exercise window I take her for a walk – 2.2 kilometres – with my poor wife running after us, trying to keep up. She still works extremely hard and well.”
Abbott was born with a rare genetic disorder called retinitis pigmentosa, which causes a breakdown and loss of cells in the eye. Formerly a civil technician specialising in concrete structures such as bridges, dwindling eyesight forced his retirement in 1993.
“Both my parents carried the gene,” he says. “Both me and my sister inherited it. As the years went by, my eyes got worse. Then in 2002, I was completely blind.” That’s when he founded the Tygerberg Association of the Blind.
When Spotlight relays a mobile number to Abbott, he memorises it within moments. “That’s the thing with blind people,” he says. “We learn to have good memories.”
Given business constraints, how does he keep his spirits up?
“There’s this story,” says Abbott. “Of a man who was complaining, ‘I have no shoes.’ Then he went around the corner where he found a man with no feet. See, there is no point in complaining. Sure, we have little income.
But I have a roof over my head. I can listen to books and take my dog for walks.” MC
This article was produced by Spotlight – health journalism in the public interest.