UYA’S STORY

This article has been written in language aimed to be accessible for people with intellectual and developmental disabilities, learning disabilities and special needs.
Children with intellectual and developmental impairment are experiencing greater challenges and dangers during Covid-19 lockdowns in South Africa and around the world.
Originally ran in The New Frame.

Uyathandwa Shange is not allowed to hug his mother when she gets home from work anymore. He doesn’t understand why. Something has changed over the past few weeks. When she returns home now, she wears a mask, she washes her hands a lot. She speaks about a sickness called Covid-19. She’s nervous. Their routine is all wrong.

Uya and his mother, Snoxolo Shange, a nurse at Christiaan Barnard Hospital, live with his aunt in a small two-roomed house in Imizamo Yethu, a shack settlement in Hout Bay, Cape Town. He has not walked out of his front door since 16 March 2020.  Like many nine-year-olds today, Uya has to stay at home while the coronavirus spreads across the world. But he has an intellectual disability as well as severe autism, and can only speak a few words. He understands the virus differently to others. 

Pain thresholds

According to his mother, Uya has a high pain threshold. This is common for people with autism, who could feel pain more or less than others. “We might only be able to catch it at a later stage, not knowing that it has been getting worse,” worries Snoxolo. “I don’t think he can tell me, ‘Mommy, I have a sore throat’ or ‘I’m having a hard time breathing’.”

PWIDD are also more likely to have other physical conditions and disabilities, which means the coronavirus could affect them in different, potentially more dangerous ways. “For example, people with Down syndrome are more likely to have heart defects, respiratory or digestive problems,” says Zuzanna Matousova-Done, an autism and intellectual disability consultant at the New Beginnings agency.

“I’ve been trying to support individuals with IDD [intellectual and/or developmental disabilities], families or the community as much as I can. But there’s a limit to how much industry professionals can help while maintaining social distancing rules when clinicians usually use assessments and face-to-face contact to help clients,” she says. “Online, it is hard to find causes, cues and triggers for new issues that come up during quarantine.”

Shange worries that treating her son, should he become infected, could be difficult. “If he gets the virus, even if it’s on the milder side, he won’t understand that he has to be on oxygen or take medication. Taking instructions from strangers could be hard for him, especially if he’s not allowed visitors. They would probably have to sedate him,” she says.

Even as lockdown regulations move down the various levels and some restrictions are lifted, Uya will need to stay in his own strict lockdown. “He doesn’t understand why he can’t hug someone he sees on the street, he won’t know that he can’t touch anything.” 

Shange tries her best to keep him entertained and stimulated by doing school activities, but there’s only so much she can do. “He gets bored and bites his hand, he tries to bang his head on the wall. This is how he tries to calm himself down. It’s not his normal behaviour,” she says.

Uya bounces around the room as the camera clicks. “That’s Uya,” he says excitedly when he sees himself on the camera screen. It’s the first thing he’s said to me, one of the few times he’s even noticed the camera. “Yes, that’s Uya,” I smile.

People with intellectual or developmental disabilities or both (PWIDD) can experience difficulty learning and remembering, and need more help with day-to-day activities and taking care of themselves. It is estimated that between 1% and 3.5% of people in South Africa have some form of intellectual or developmental disability. These differ from person to person and some need more help than others.

For several reasons, their disabilities might make it more difficult for PWIDD to report their symptoms and their sensitivities may affect testing. Nashareen Morris, a doctor and clinician at a state psychiatric hospital, says PWIDD often don’t recognise when their body is trying to tell them that something is wrong. 

“They can’t always interpret the signs and signals from their bodies. Because of that, they might struggle to verbalise and answer questions. For example, if someone says, ‘My hart is seer (My heart is sore)’, it could mean different things. It could mean that they have physical pain, like in their chest or lungs, or it could mean some form of emotional distress. It becomes difficult for healthcare professionals to interpret this,” says Morris. 

The lockdown has also made it more difficult for PWIDD to get the medical and psychological health services they need. Matousova-Done, who works with PWIDD and their families, has been receiving a lot of distressed calls. 

Intellectual and developmental disabilities make people not only more vulnerable to the coronavirus but also to the negative effects of the lack of stimulation created by the lockdown. For PWIDD, this can be even more harmful. “For children like Uya, they have very limited mental capacities. His memory is compromised. So when things go back to normal, he may have already forgotten so much about the outside world. We may have to go back to the beginning,” says his mother.