2020, a summary

I don’t want to be like every think piece from the past 8 months that begins with “in these unprecedented times”, so I’ll just update you briefly on what 2020 has brought for me. I started with health crises in the family and a whopping concussion, then a massive relapse which led to me needing my powerchair in my own home, a first for me.

Mum finally had surgery on her collapsed lung, 18 months in the making, after reaching about 50% lung capacity (or oxygen uptake, can’t remember which). She’s still recovering, it was a huge ordeal and entirely preventable. Medical negligence, amirite?

I also lost my uncle, grandfather (on Christmas Day!) and Patrick Cat. My friend Ani made this beautiful artwork of Patty and her Lily, which makes me want to weep with sadness and gratitude.

Good news: I finally received my new powerchair, a TA iQ MWD, after many NDIS stuff-ups. Hooray to freedom! Bad news: I’m too wiped out from the fitting to have tried it properly (2 hours outside! I got sunburnt on my hands, perhaps my dorkiest moment ever).

During this process, I was reviewed for my eligibility for NDIS, which, as it turns out, was a decision made by an NDIS staffer who didn’t read any of the documents on my file before deciding I was ineligible. I only found this out, and had my review overturned, because I made a formal complaint and my MP’s office made one on my behalf. Otherwise, I’d have lost my funding. I’m still recovering from the mental health effects of this experience, which the National Access Team manager described as a “learning experience” for the staffer involved. (Meaning, we won’t discipline her, fuck you.)

I made very few clothes, and lots (100s!) of masks. I didn’t see my brother for months, as he was in lockdown in Melbourne. But at least I knew he was considering the lives of others, which is more than I can say for many.

Perhaps the greatest challenge of this year was the realisation that Disabled, poor, BIPoC and other marginalised lives who were disproportionately affected by COVID meant nothing to so many people. Zip, nada, zilch.

It’s one thing to sort of know, in the back of your head and heart, that when push came to shove you were seen as “less than”, but it’s quite another to see people openly admit that they thought the elderly and Disabled should die off, that it didn’t matter how many people had to die so long as they could play a round of golf or go shopping at the Mornington Peninsula.*

This time last year, my hopes weren’t exactly high, but one thing I didn’t expect to be saying in a year’s time was “gee, it seems like a lot of the world is really, really into eugenics.”

Man dressed in Nazi uniform asks, are we the baddies?
If only they had this much insight.

So. Not entirely unprecedented times, but perhaps Entirely Predictable Response to a Global Pandemic When Only Some Lives are Valued. At least it’s given my “unfollow” button a workout.

*Australia might seem like a utopia right now for how we handled the pandemic, but the lockdowns were deeply divided along race, class and ability. If you want to read more, The Other Sociologist’s Pandemic, Race and Moral Panic is a great overview. It’s written before Melbourne’s latest stage 4 lockdown, but explains how certain ethnic groups were penalised and unfairly targeted for a pandemic that was essentially introduced to, and spread within, Australia by rich white people.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic disability advocate.

6 thoughts on “2020, a summary”

  1. Oh Siobhan, you will always be known as an educated erudite and brilliant writer. A giant of compassion and pushing the agendas of fairness and social justice. Your intellectual and emotional gifts are the footprints that mark you. I’m proud of the support you’ve given your mother and grandmother. You are not invisible Siobhan, you are amazing, even if you’re bruised from banging your head on the glass ceiling. Keep on keeping on, be the voice you’ve chosen to be for others. 💜💙♥️

    Liked by 1 person

  2. What Elizabeth wrote above is so perfectly true! And yes, my FB has taken a regular path of unfollowing as people, who I didn’t think were monsters, seem to struggle with how their self importance should be at all impacted by say people who aren’t as perfectly healthy as them. They horrify me. A world divided. Sending wishes for your mom to heal as best and as quickly as possible. Hoping the healing brings her better health in general.

    Liked by 2 people

  3. I hope this is okay to comment: The author of the article you linked supports mandatory testing. Since COVID testing is invasive, this would deeply hurt many autistic people like myself. To have anything pushed up my nose, let alone by a mandatory order, is not something I would ever be okay with. It would be deeply hurtful to me mentally. Keep in mind I cannot even let my own mother hug me, let alone be okay with a stranger sticking anything up my nose. This is why I am very careful and have barely left my house all year, because I would never get the test so I don’t ever want to put anyone in danger. Being disabled myself, I worry about the people in my community others grossly think are expendable. I also worry about the rights of autistic people being ignored as they so often are.

    I don’t blame the writer for not considering an autistic point of view, because if she has no experience with those on the spectrum how would she know. But it is still an uncomfortable idea to hold, mandatory testing, given that not having autonomy over your own body would be deeply triggering for a lot of people, not just those on the spectrum.

    I just needed to get that off my chest!

    Sending you and your family all the best. I know what many Australians have to go through when it comes to disability and it’s so stressful and awful how they treat people. Thank you for sharing your warmth with the world!

    Liked by 2 people

    1. Fair comment, I missed that sentence in the article. Thanks for pointing it out, mandatory testing would be impossible for many people. It must be very stressful to know you have to be extra careful at this time. And you’re right, Disabled people are considered entirely expendable right now. Best wishes for you and your family.

      Liked by 1 person

Thanks for dropping by! I read and value each and every comment you leave. Constructive criticism is welcome.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.