I have something different for you today. I want to share with you what it’s like for me to be high risk during this COVID-19 pandemic and dig into some of the ableism that has surrounded it. I have wanted to write this blog post since COVID-19 came to Australia, but I have been so exhausted by the stress that I haven’t been able to compile my thoughts. This isn’t perfect, but I hope it gives you some insight into what it has been like for me to be high risk during this pandemic and how much ableism impacts the disabled community.
Just in case someone reads this in the future, a novel coronavirus started infecting people in late 2019, in Wuhan China. The virus itself is called SARS-CoV-2, and it causes the disease COVID-19 (short for coronavirus disease 2019). Some people with this virus have no symptoms, but are still able to transmit the virus to others. When the virus does cause symptoms, a fever, cough and malaise are are typically seen. For some people this progresses to a high fever, severe cough and shortness of breathe, which is often associated with pneumonia. The full list of symptoms is still evolving, but loss of smell, gastrointestinal symptoms and an increasing number of neurological symptoms are now being reported. It is unknown if, and how long people will have immunity to the virus after being infected, and we won’t know for a while how many people are effected long term because of this infection. Over 250,000 people have already died from COVID-19, and more people are infected daily. This is why it is so important to stay home and flatten the curve.
People aged over 65 and those who are immunocompromised are at higher risk of complications from COVID-19. I am unfortunately well and truly in this high risk group, due to my health conditions. My immune deficiencies make me particularly prone to viral respiratory infections. I am also IgA deficient, so I don’t have that first line of defence in my nasal passages and airways that healthy people do. That means that a respiratory virus can get in to my system a lot easier, and the infectious dose (individual number of viruses for me to get infected) will be lower than for most people. I am also IgG deficient. IgG makes up about 75% of serum antibodies in humans. IgG plays a big role in controlling infection in body tissues.
On top of that, I am also Natural Killer Cell deficient. NK Cells are best known for killing virally infected cells and controlling early cancers, but there is still a lot that is unknown about them. My immunologist did a study on patients taking immunosuppressant medications after organ transplant to see which immune cell deficiency was the most significant. His study showed that a Natural Killer Cell deficiency was the best predictor for future patient hospitalisation due to infection. So NK Cells are very important in protecting humans against infection. He has explained to me that I am in an even worse position, as not only am I deficient, but the small amount of them that I do make, don’t work properly. Obviously all of this doesn’t bode well for any respiratory virus, let alone SARS-CoV-2. A big part of the severe COVID-19 disease progression is being linked to a cytokine storm, in which NK Cells play a role. Obviously it is completely unknown how my body would react in that situation with all of the immune complications, but we already know that my immune deficiencies cause severe over-reactions to things like vaccines and medications, so my body certainly has the ability to cause excessive inflammation. Because of all of this, I have been warned by my doctors that I cannot get COVID-19. Therefore, I have been in self-isolation since the virus came to Australia, and will continue to be until a vaccine is made and enough people have had it, so that I can be protected.
Before COVID-19 started, I was already living a life mostly at home, and when I had to leave for a medical appointment, I would always be wearing a mask for protection. I’ve had to wear an N95 mask out of the house for over a year now, and during that time I have had put up with constant staring and to ignore the jokes said about me as I walk passed. I had really hoped that this pandemic would help people understand the necessity of masks for some people in society, but unfortunately Australian’s haven’t got the memo. I have seen a lot of reports from people who wore masks to the supermarket for their protection, who have had to endure abuse because they are choosing to protect themselves and those around them by wearing a mask. There are a lot of different statistics out there about masks, but the general consensus is that masks do help stop the spread of respiratory illnesses, especially if those who are contagious wear them. We know that you can show no symptoms but still be able to transmit this virus, so it is just common sense that every single person should be wearing a mask.
Obviously, all health care professionals need to be supplied with enough PPE to protect them at work. There’s no argument there. But so many people have now started making masks from home that aren’t appropriate for health care professionals, but can be worn by the general public to help protect each other. The masks I have are the Cambridge Mask Co N99 Washable Military Grade Respirator, in the Lady MacBeth Pro and Roses Pro. I obviously bought these masks long before this pandemic as they were the only reusable and washable mask I could find that was able to filter out viruses (as well as dust and particles as small as PM0.3). This is the same sort of protection needed by health care professionals, but they really need disposable products. I use these masks because they protect me from healthy people who carry respiratory viruses that could kill me, but I am not taking anything away from medical professionals by doing so – I just want to make that very clear. I really want everyone to understand this, as I will still need to wear a mask in the post-COVID-19 world, as I want people to be understanding and not abusive towards me.
Isolation and Ableism
As I said earlier, my life was mostly spent at home with just my dogs before COVID-19. I have had years of practice at being home alone without socialisation or support, as have many other disabled people. We have been trying to educate people about the isolation we experience because society has refused to include us, but it has all gone unnoticed. Since lock downs have rolled out, many healthy people have suddenly had a small taste of our lives, and yet disabled voices are still being ignored. We are the people who know how to live for years at home, how to keep ourselves entertained, and how to stay on top of mental health when isolated, but our expertise is not being used. What’s even harder, is that we have fought for so long to get small adjustments to be able to participate in society – like remote meetings for work and school, and video calls for socialisation, but we were refused those things, only for them to be immediately rolled out when healthy people needed them. This is ableism. We deal with it on a daily basis, but this pandemic has made it so much more obvious and painful. I lost all my friends as I wasn’t able to do “healthy people things” like go out clubbing (yes really). Any suggestion of activities that I could participate in, like video chats, were never accepted as ‘good enough’ by those healthy individuals.
I don’t work and haven’t been able to study to finish the last subject of my double degree for many years, as work places and universities have refused to allow me to do everything over video calls and online. You will hear the same story from many disabled people. We have systematically been left out of society. But as soon as lock downs were put in place, all the adjustments we needed were immediately rolled out. I hope these adjustments will be kept in place so that we can actually be included in society in future, but I won’t be surprised if they aren’t. Change won’t happen if it is just us disabled people trying to make change, we need others to also speak out on our behalf. It’s easy for organisations and institutions to ignore disabled people when the rest of society does the same.
People with chronic illnesses and disabilities are always faced with ableism, but this pandemic has accelerated the rate and intensity of its impact on us. In the first few weeks of the virus, every single news broadcast would say that it’s “only the vulnerable” at risk of dying from this virus. It was said so often that ‘vulnerable’ started to sound like ‘expendable’. You should not feel reassured by being told that those with underlying health conditions and the elderly are the ones who will die. We are not expendable.
Since all of those news broadcasts we have seen leaked documents stating that people with certain illnesses or disabilities were to be taken off ventilators, or not given one altogether in favour of abled people in the USA. In the UK there were many reports of do not resuscitate orders being put in place without the patient knowing, so that abled people would get priority access to health care. And in Australia the government has completely left out disabled people from their stimulus package. People on the Disability Pension now get less than those on the Jobseeker payment, even though the cost of living is much higher for people with disabilities, and has risen even further since the pandemic began. Now people have even been protesting the quarantine restrictions on the basis that their “freedom” and the economy are more important than other people’s lives. Not even a single life should be lost for the sake of the economy. I will not put a price tag on a life. The economy can recover, but people can not be brought back from the dead.
This isolation period will give you a tiny insight into the lives of those of us who have been isolated for years. It is thankfully only temporary for you. You can go back to your normal life after this. You don’t have to go through the trauma of losing everything you held dear. Your support network won’t abandoned you because your body can’t keep up with them, your work and schooling prospects won’t have vanished overnight, and you won’t have to spend years alone in your home focusing on everything you thought you could have achieved, but will now never get to. You don’t have to spend years grappling with your worth, as society is so focused on worth being tied to economic output and usefulness. That’s not to say this won’t be hard for you. You have the right to grieve during this period, you have lost your sense of normalcy, safety and stability. You will have anticipatory grief as well as grief over losing things like events and life moments that should be happening now. So remember to be kind to yourself, but when this is over, don’t forget that there will still be a lot of people living like this who need help.
I hope the post-COVID-19 world is more kind and compassionate. I hope people realise that masks are vital for some people to live and that if you have any sort of infection, you must stay home. I hope that healthy people understand that a virus that is mild for them, is deadly to others, and that their actions can take a life of another. I hope that healthy people listen to chronically ill and disabled people. I hope you fight for our right to be included in society. Many disabled people can work and study if they are given the tools needed to do so, but you need to help advocate for that. I hope that people reach out to those who are isolated in society and are willing to socialise with them online and via video, instead of forcing ableist standards on them. And I hope that when a vaccine for COVID-19 is released that you will get it and encourage those around you to do so too. My life depends on you following lock down and social distancing rules, as well as having the vaccine when it is released. Please do it for me.
I have more to say, but this is all I will be sharing with you on my blog. My stress levels will rise again when quarantine restrictions start to be pulled back, but I will be back to doing beauty reviews as soon as my body lets me. I have written a couple of other things related to my health, you can find them in the health section of my blog if you want to read them. I would really like to know if you are effected by ableism and if this pandemic has made it worse for you too. If you’re healthy, leave a comment and let me know if you learnt something, or if you will be more aware of the ableism in the community in future. Are you going to help fight for a inclusive world post-COVID-19?
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