People living with disabilities struggle to overcome severe disruptions to life and health caused by the pandemic
Disabled people have been battling to access their care and have sometimes been cut off from their caregivers as the pandemic safety measures and strain on health systems has further disadvantaged them.
Much has been written about how the Covid-19 pandemic has exacerbated existing issues and shown up crises within societies globally — hunger, poverty, access to healthcare and education to name just a few.
The constant fear and anxiety around potential exposure to the virus and the isolation brought about by physical distancing has also led to increased mental health issues in the general population with research proving that marginalised and disabled communities are particularly affected. According to the US Centres for Disease Control and Prevention:
“Adults with disabilities report experiencing frequent mental distress almost five times as often as adults without disabilities.”
Comorbidities are also of grave concern for anyone who contracts the virus and this is another stressor for many disabled people who have secondary conditions such as a suppressed immune system or respiratory condition.
In the UK, it was reported that disabled people made up six out of 10 Covid-19 related deaths.
Hunger has also been shown around the world to have been exacerbated by the pandemic, starting at the beginning of 2020 when supply chains were overwhelmed when people around the world, in a frenzy of Covid-19 fear, went out and panic-bought as much food as they could. Research has shown that “populations with disabilities experience greater risk of food insecurity”. This is outside of a pandemic and starts with being able to enter a supermarket, for example, and shop — an activity able-bodied people take for granted. At the start of the pandemic, any disabled person trying to stock up on groceries would have had a very hard time waiting in queues, dealing with crowds of shoppers and often also with the required mask.
During a Cornell University webinar entitled Adapting during a pandemic: Removing barriers to individuals with disabilities, Vikram Pagbatan, occupational therapist and professor in occupational therapy, pointed out that for many disabled people, wearing a mask is a huge challenge as they may not be able to put it on or take it off easily or without assistance.
Pagbatan, a New Yorker and Indian-American, is also researching how the pandemic is affecting the health and wellbeing of New Yorkers. Pagbatan says:
“The use of face masks or face coverings has presented with various challenges for an array of individuals with existing disabilities, such as those living with arthritis, Parkinson’s disease, dementia or Alzheimer’s and individuals within the autism spectrum disorders and individuals with speech issues as well.”
He also says that “certain types of face coverings often restrict the flow of respirations and can create a near panic attack experience for those with existing respiratory issues.”
He adds that physical distancing, and washing and sanitising hands “can be monumental tasks for individuals with dementia or Alzheimer’s and those with cardiac conditions such as hypertension or high blood pressure or even congestive heart failure where the simplest task can take three or four times as much time as compared to someone who does not have that condition”.
Pagbatan says disabled people face hardships “in access, communication and primary and follow up care… As a home care therapist, I have painstakingly seen this pandemic create an almost ‘age in place’ situation whereby individuals with disabilities are trapped within their homes, unable to gain access… to basic services and resources”.
The disruptions in the lives of people with disabilities have been moderate to disastrous and are ongoing. Disabled children have also been affected. Lack of access to stimuli, facilities and specialist teachers saw some children regress in their learning and behaviour. Disabled children face many barriers to school in “normal” times and the pandemic made most of those barriers insurmountably high.
Pagbatan also highlights the important role that caregivers play in the lives of the disabled: “Caregiver support is an essential component in combating the various challenges…”
Capetonian Tarryn Tomlinson, an enthusiastic life coach, businesswoman and social activist, was 18 years old when she discovered that she had rheumatoid arthritis. Tomlinson explained in an interview that:
“It happened very very quickly and very suddenly… I was getting up to go to a club one evening and my knee just felt like it jumped out of its socket and very shortly it spread to the rest of my joints and before I knew it I needed to use crutches and then a wheelchair.”
Tomlinson does not allow her wheelchair to slow her down and even conquered Kilimanjaro in it in 2020. She lives her life to the full and is working actively towards making sure accessibility of public spaces becomes less of an issue for disabled people. She is an accessibility auditor for hotels. “I make sure that we up the standard of accessible features for people with disabilities.”
Speaking to Daily Maverick as South Africa was going back to a stricter lockdown this week, Tomlinson said while she does not have issues with access to medication or medical facilities because she does not need any, she has found her life more difficult during the pandemic.
Tomlinson is cheerful and snappy looking in a white and yellow striped top. She gives herself a once-over at the start of the video call: “Good lord, I look terrible from this angle!” she laughs and adjusts her position.
“What I can definitely say… ja the mask has been a challenging thing, I can’t get my arms up much higher than my shoulders, so to put the mask [loops] behind my ears is difficult… my boyfriend is with me a lot of the time so he’ll help me but otherwise I just end up putting a scarf on, like a snood… and then pulling that over my mouth”.
Occasionally, Tomlinson also needs to go to meetings and transportation is tricky:
“I travel with Uber… of course, the driver needs to help me get into the car and it’s also uncomfortable for me to sit at the back… and due to Covid regulations you must sit at the back.”
This has caused some sticky moments, she says, as she also needs to be assisted out of and into the wheelchair: “There was a couple of times where I did have like a bit of trepidation not just from my side but also from the driver’s side as to whether he would have to lift me and put me into the car.”
In some instances, sanitiser is an issue, she says, like when it is on a pole and “you have to put your foot down and then it squirts out of the top. That is fine for someone who can use their feet — I can because I’m not paralysed, I simply have arthritis… but for someone who cannot and is going in on their own…”
She said some of her hearing-impaired friends have communications issues due to the masks cutting off their ability to read lips and that many people also do not want to go out:
“Knowing that when you do go out you have to be reliant on other people to help you and they might not want to or you might not want other people touching you. And it’s a greater risk — someone’s pushing you from the back, they’ve got your [wheelchair] handles and you can’t turn around to sanitise behind you.”
Tomlinson said that her boyfriend is with her “a lot” and helps her when she needs assistance. He might not be a caregiver, but many disabled people cannot get through normal daily tasks without one.
Pagbatan says a part of the pandemic that is often overlooked is caregiver fatigue.
“Whether you’re a parent, son, daughter, sibling, partner or a medical provider, the likelihood of experiencing fatigue from a physical, mental or emotional state is very high during the pandemic. Recognising and prioritising your own health is a top priority when addressing the needs of others.” DM
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