Writer, Phoebe Jenkins, explores what it's like to be one of the forgotten in the past two pandemic years. Struggling to get support and diagnoses, Phoebe exposes the explicit ableism that many in the disabled community have experienced.
Trigger Warning: ableism, medical incompetence
(Photo by Joshua Rawson-Harris on Unsplash)
[Image: a south East Asian woman looks glumly out of a window, through the slats of blinds.]
by Phoebe Jenkins.
Everyone is exhausted of hearing and talking about the pandemic that has held the entire world in its clutches for over two years. People are sick to the back teeth of COVID-19 consuming their lives, their livelihoods for far longer than anyone could've ever seen, still with no end in sight.
For some people, however, their voices haven't been listened to throughout the entirety of this pandemic. Their stories, the casualties, the hardships that have been faced as the whole world was forced to come to terms with a situation haven't been heard – are still not being heard. These people are disabled. Almost all of us, all over the world; especially those that are chronically ill or - as we are more commonly known nowadays – clinically vulnerable, have been deeply affected, in ways that the non-disabled people cannot even begin to understand, by the pandemic.
Disabled people have screamed and shouted every single day since the inception of the pandemic for our voices to be heard.
Disabled people have screamed and shouted every single day since the inception of the pandemic for our voices to be heard, for our lives to be considered equal to that of non-disabled people, but instead we were met with silence. It is almost as if non-disabled people are the controllers, and we – the disabled people of the world – are merely a reason to hit the mute button.
If you are non-disabled and you're reading this, there's a decent chance you may be thinking that this is an overreaction; that what the disabled community have experienced can't be as different or any harder than what those that aren't disabled has faced over the past two or so years; but you would be sorely mistaken.
From the beginning of COVID-19 (and in all honesty, an issue long before COVID-19 was a thing), disabled and clinically (extremely) vulnerable lives have been seen as disposable. We are not seen, and therefore not treated, as equally important as our non-disabled counterparts. This was seen heavily pushed by not just the general public, but also by governments all over the globe through the widespread roll out of campaigns, advertisements, continuous trending on all forms of social medias, proudly stating that you shouldn't be afraid of catching COVID, because it would only affect the elderly and the disabled.
I want you to read that again. To many people, my life as a disabled person, millions of disabled lives all over the world, were seen as collateral. As nothing more than an 'only'.
This was further seen when many disabled people were contacted by their primary care physicians whom were advising and requesting that their disabled and clinically extremely vulnerable patients sign DNR (do not resuscitate) orders, making it very clear that some – a lot – of healthcare professionals also see our lives as collateral; that because we are disabled and need access to medicine and care more than your average non-disabled person, because a lot of us have complex medical conditions that require constant and consistent treatment, and because we are at higher risk of complications from getting COVID, our lives are no longer deemed worth saving.
What makes this even scarier, is that some disabled people were receiving these requests for DNRs long before any preventative measures and restrictions were put in order to help stop, or at the very least minimize, the spread of the virus; even before mask mandates began.
We disabled people already live our day-to-day lives, knowing that our lives are seen as less important to society.
While I am sure that this isn't a reflection of all healthcare professionals, and I am aware that this didn't happen to all disabled people during the pandemic, but the fact that it happened at all is awful and terrifying enough. We disabled people already live our day-to-day lives, knowing that our lives are seen as less important to society, but having this confirmation and very clear display that our lives were also less important and deemed less worthy of care in light of these recent events by certain medical professionals is nothing short of harrowing.
Further evidence of this is seen by the halting of necessary treatments that the chronically ill and clinically extremely vulnerable people very sadly experienced. Our appointments were cancelled, or made inaccessible. I am a prime example of that.
As a deaf person, who is also physically disabled, the switchover from physical, in-person appointments – while, I do completely understand that it was, completely necessary – to telephone consultations made my life so excruciatingly difficult. I found myself needing my mum, who is my wonderful carer, to make these phone calls on my behalf or have her sit in with me because these places didn't have video call conferences offered, and would oftentimes refuse to consult with me over text or email. It was embarrassing for me as a 20-year-old to need my mum to make my phone calls on my behalf because there were no other accessible options, and my only other real option was to cancel the appointments that I so desperately needed so that I could access treatment that I also so desperately needed. No matter which way I looked at it, it was always going to be a lose-lose situation.
Sadly, this wasn't an isolated incident, either.
I spoke to several members of the disabled and clinically vulnerable community to hear their stories of how the pandemic has affected them, in both positive and – sadly, mostly – negative ways. One person said: “with having ADHD and poor audio processing, only being able to book appointments via the phone and not on the app made my life difficult. I really struggled to organise this aspect of my life. It was the same with the dentists, too. It sounds trivial, but it has put so much stress on me with booking appointments not being as easy as it was pre-pandemic.”
Another person I spoke to, Bailey, who has EUPD (emotionally unstable personality disorder), ADHD, brittle asthma, EDS (Ehlers Danlos Syndrome), Narcolepsy, anxiety, depression and more, spoke on how afraid they were to need treatment in the hospital, be that via admission or the emergency room, due to how widespread COVID had become, especially in the time before the vaccines had been curated and rolled out. This could have become potentially dangerous, as having Ehlers Danlos Syndrome means that they have frequent joint dislocations, some needing medical help, but the fear of catching COVID-19, especially with having a compromised immune system due to their brittle asthma, outranked their need to have their joint put back into place by a professional; and they knew that these doctors wouldn't be helpful if they were to ring out of hours, or their regular specialists or general practitioners. No one should have to make such frightening decisions on whether to get treatment to save themselves from possibly dangerous and damaging side effects/symptoms, or whether it's more danger than it's worth.
It is a complete catch-22 situation, and whichever decision is made, it will always be lose-lose.
Bailey also told me that, at one point during the pandemic, they were in a mental health crisis due to their ADHD and EUPD. With frequent severe mood swings and contemplation of suicide, they contacted the mental health team, who in turn told them that they 'weren't a danger to themself as they hadn't written a suicide note', even though they had told their team that they were having thoughts of ending their life. This treatment caused them panic attacks for days, and even though they continued asking their team for help with their mental health, Bailey told me that they are still unmedicated for their EUPD. They state that they partially attribute the lack of care surrounding their mental health from their medical team to the fact that they live in such a small village, saying: “If I lived even just 20-30 minutes down the road in either direction, there would've been so much more help made available for me.”
Many disabled people also had to have their at-home care halted, as it posed such a risk with community carers coming in and out of the house, potentially bringing the virus to the immunocompromised people that they were caring for. This left many disabled people who need carers to do day-to-day tasks and simply survive without the care that they so desperately need. Many families, who are not equipped to become full-time carers, took over the care role, or these disabled people had to go to a nursing facility or a care home, in which – for a lot of people in care facilities – no visitors were allowed. No one should have to make that choice during such an already frightening and isolating time.
...the NHS was so overstretched and underfunded that they simply didn't have the time or resources to help treat or diagnose me...
For me, the pandemic made it terribly difficult to access proper healthcare and treatment, because the NHS was so overstretched and underfunded that they simply didn't have the time or resources to help treat or diagnose me, while I was struggling with the onset of frightening and severe new symptoms. The majority of these symptoms are still ongoing, meaning I still struggle with them even now, and I also don't have any treatment plan or diagnosis for them yet either.
I experienced this in several areas of healthcare, though, including with both dental and mental healthcare. I had wisdom tooth removal in May 2021, and I knew I wasn't healing correctly. It took six months, and countless trips to the dentist (trips where I would be fobbed off and told that it was fine), before I was told that a large polyp had formed and I needed further surgery to remove it. I'm confident that, if the pandemic hadn't been so fluctuating and at this time was steadily getting worse, this wouldn't have happened.
Another way that the disabled community was greatly affected by the pandemic, was non-disabled people co-opting the sunflower lanyard movement as a way to excuse themselves not wearing a mask, when those lanyards aren't mask exemption cards. They are, however, used by disabled people to indicate that they have an invisible disability and may need extra accommodations. By non-disabled people taking over using these lanyards unnecessarily, they have made disabled people who need to use sunflower lanyards to do daily tasks ie. grocery shopping, or even something as simple as going for a coffee, are hesitant and afraid to use them, especially if they are able to wear a mask.
The fact is, many articles and statistics show that disabled people have been disproportionately affected throughout this pandemic, a fact which has continually been argued over by non-disabled people yet is very blatantly true. Six out of every ten COVID-19 related deaths were disabled people. That is a total of 59% of deaths. Over half of COVID-19 related deaths were members of the disabled community. 46% of disabled people, compared to the 29% of non-disabled people, said that the pandemic negatively impacted their mental health. Over a quarter of disabled people experienced trouble gaining access to healthcare and help for issues not relating to COVID-19.
Not to even begin to mention that the pandemic has become, for many, a mass-disabling event, with so many COVID-19 patients experiencing long-term side effects, or developing long-COVID.
It truly begs the question: Disabled people have been disproportionately and negatively affected by the virus. Disabled people make up 59% of COVID related deaths. So why are our voices still being muffled? Why are our experiences and our struggles throughout the pandemic being seen as lesser than, as less important? Why are our struggles being undermined and fact-checked by those that could never begin to understand our experiences? Why are we the ones being stifled because our truth is too hard for non-disabled people to hear?
Article by Phoebe Jenkins