By Carlie Park
I am bursting to talk about what my friends and I need during the pandemic. However, the opportunities for me to speak out have been fewer than usual and I am being shouted down for my views more loudly, writes Carlie Park.
During the pandemic, healthy, non-disabled people (AKA “Low-Riskers”) have been setting themselves isolation challenges to stave off boredom and weight-gain. They have Tik-Tok dance challenges, quarantine workouts, dress-ups for bin day and bake-offs.
As someone at high-risk of dying from the virus, I reject these Low-Risker challenges! I’m over here fighting for my rights to information, healthcare, supplies and to have a say. The following are my iso-challenges.
Challenge 1: #IsoInformed
I’ve heard Low-Riskers complain of being overwhelmed by the amount of information they have received from the government during the pandemic. As a High-Risker, I’ve been challenged by the opposite problem; I get more information about what I should do tomorrow from the weather report than I do from the pandemic report (“put an extra doona on the bed” is clear, “take extra precautions” is not).
It was up to me to make up our household’s restrictions, based mostly on what I’d read online. From March, we entered strict lockdown – we only leave home for brief walks and non-avoidable medical appointments and only in a mask. I have no idea if we’ve taken the right precautions, but I think as someone who needs to be the most careful during the pandemic, I have the right to government health information that is actually for me.
Challenge 2: #IsoHealthy
One message I keep hearing from the government is the importance of continued access to healthcare during the pandemic. But as a High-Risker, this has been a series of battles. For example, at the beginning of the pandemic, I needed a blood test. This was one of those tests that involved putting my body through what felt like a ninja-obstacle course – fasting, sitting upright for two hours, etc. However, after completing the ninja-events, the pathology clinic refused to let me enter their building. Why? Because they mistook my 6 month long cough for a potential symptom of COVID-19.
It took days for my body to recover from the effort of that experience. I am now anxious about healthcare visits, particularly because I have chronic fatigue with multiple COVID-like-symptoms. My sickly body has the right to healthcare. Damn, I think it has the right to priority healthcare during a crisis.
Challenge 3: #IsoSafe
When clinics have seen me, the next challenge has been trying to do this as safely as possible. I figure that clinics and hospitals are high-risk places for High-Riskers to visit. Yet the government has not provided me with any information on what I need to do to be safe. Worse, visiting different clinics has been an unlucky dip – I never know what I am going to get but most of it has been bad.
For example, a specialist insisted that I see them at a hospital (though it was not necessary), they did not wear any protective equipment when examining me and they discouraged me from wearing gloves. It was terrifying. As a High-Risker, I think that the government and healthcare professionals should be taking the lead in protecting my health.
Challenge 4: #IsoStocked
When we started home lockdown in March, I thought that it would be easy to organise home deliveries though large businesses. Ha! The first thing Coles and Woolworths did during the pandemic was to stop all home deliveries! Six weeks in, they then offered a “priority delivery service” that did not prioritise us High-Riskers at all. I was unable to purchase my speciality diet foods and my orders arrived half empty. Similarly, despite being on a first-name-basis with the pharmacists at my local chemist, they refused to home deliver my sizable pile of monthly medications.
I am in a privileged position in that I have been able to make arrangements with several local independent stores, plus friends to home deliver everything that we need. However, I believe that this should be easier, and that all High-Riskers have the right to safely access food and medications during a crisis.
Challenge 5: #IsoVoice
I have found the public pandemic discussion either absurdly irrelevant (“surely going out fishing is an allowable exercise if I row my boat”), frustratingly wrong (“we cope fine with the flu each year and COVID-19 is no different”), or upsettingly ableist (“there’s no need to shut-down the economy because it only kills the elderly and people with underlying health conditions”).
I am bursting to talk about what my friends and I need during the pandemic. However, the opportunities for me to speak out have been fewer than usual and I am being shouted down for my views more loudly. I am taking every possible opportunity to tell my story (including writing this blog post). I have a considerable stake in what happens during this crisis and a right to be part of the discussion.
Carlie Park is a disabled woman and disability advocate from Melbourne. She writes the whimsical blog “Chronically Crappy” and is a member of committees at Women with Disabilities Victoria. Carlie dabbles in art-activism and speaking with the media about disability issues.