‘The worst thing about making a will’, my partner said to me, ‘is that you never get to find out if it worked out the way you wanted it to.’ And we laughed, genuinely laughed because – as disabled people – we both know that dying as a result of this pandemic would be the worst thing, but we’ve reached our capacity for agonising, tearful conversations on that topic, and laughing is a way to keep going. Laughing acknowledges that the truth is real, and it is approaching, but it’s not here yet. Like our amusement at being able to buy French champagne from Woolworths for our tenth anniversary, but still not being able to buy Australian toilet paper. It’s funny now. It won’t be in a few weeks’ time when the toilet paper we order does not arrive again or, as has happened to a number of our friends, our shopping is stolen.
Humour is also a way for disabled people to find out others’ underlying beliefs about us. This becomes particularly important at times like these, when whether members of our community should live or die becomes a hot topic. My favourite of these probes was published on Twitter in late March:
Good morning to everyone except those advocating for the sacrifice of some “for the health of the herd”, you can have a fucking awful morning you eugenicist bastards
I have found through retweeting and retelling the brilliance of the statement lies in its multiple dimensions. Some understand that it juxtaposes sacrificing the lives of minority group members with wishing someone a fucking awful morning, and revealing the truth about which the listener thinks is worse. Some understand that this exercise is not purely theoretical – that some disabled people are not on social media to experience this morning, good, fucking awful or otherwise.
Some disabled people are not on social media because they don’t have the internet, or don’t have somewhere to live. Some need to have a break from social media because yet another day of hearing nondisabled people continually affirming that ‘we are all in this together’ – while remaining unconcerned that another ‘high-risk’ person has died – is too much. Some are not here because the government’s lack of support for us during this pandemic means the essentials of life – like getting out of bed, getting groceries and cooking meals – take more energy than they ever have before, leaving none for social media, even if it is the only way of connecting with other people.
Some are not here because they have died. Often these people are not counted in COVID-19 total deaths, either because a health condition they had before COVID-19 was put on their death certificates, or because they didn’t die from the virus itself but from a related consequence. Since they are not counted there are no official figures, but disabled people know that the number of those within our community who have died from neglect of one kind or another has increased since this pandemic began.
During the Sydney Opera House’s Antidote 2019 festival, appearing on the panel on The Economics of Disability, First Peoples Disability Network CEO Damian Griffis said:
I worry that there will come a time not too far away, and if Australia was to go into a recession say, then people with disability will pay for that recession in many ways.
And here we are, though not only in Australia. Never before have I read, heard, and watched so many people from so many places pleading for their own lives and those of the people and community they love.
Here in Australia many people, including Senator Jordon Steele-John, argue that the sites where disabled people have been working, packaging Qantas’s headphones for $2 an hour, should have been closed like every other nonessential service. In the UK a disabled person and CEO of a small not-for-profit organisation argued for the right of themselves and others who might take longer to recover from COVID-19 to not be denied critical care:
I never thought I would use twitter to beg for my life. I’m angry and scared. We are all being betrayed if we let our most vulnerable people die.
In the US, pioneering disabled writer and artist Mel Baggs was forced to ask for help because her benefits had been arbitrarily stopped, leaving them with no money for life-saving medication and in-home care:
Everyone dies but I want to die of a disease or old age the way most people do, I do not want to die of preventable stupidity. Please help. Please help us. We are running out of everything. Please, please, please help.
That was also at the end of March. She died on the 11th of April.
I know that, faced with the scale of this injustice, people often feel that their response needs to match it. Lacking the time, energy and influence to create something equally as formidable intimidates them into what they think of as doing nothing. But the truth is that you already have been, and always will be, contributing to this situation in one way or another, not only in whether you do or don’t offer to help collect groceries for your neighbour who can’t go to the supermarket, but simply by how much you buy into eugenic thinking. Eugenic thinking is the assumption that some lives have more value than others. If at any point in this essay you have wanted to know more detail about a person I’m discussing, because you’re sure you could then determine whether their death is acceptable or not – that’s eugenic thinking.
It’s sometimes thought that eugenic thinking ended with World War II, but it did not die. Like the coronavirus, it mutated. The strain that exists today is so deeply imbedded into cultures that a high percentage of the population unknowingly have it and transmit it to other people.
If I tell you that Mel Baggs was thirty-nine years old, you will form an opinion on whether she was too old or too young to die. If I told you that Mel was an internationally successful author who, as one activist put it, ‘wrote in a way that made me see myself in the world more vividly than almost anyone else would for a very long time,’ would you change your mind? If I told you that Mel was labelled ‘developmentally disabled’, would it change your mind? Would you then also wonder if what I said about her authorial talent and influence is true? Most likely you’ve never heard of Mel before, and have no knowledge of her circumstances, but you will have formed general ideas throughout your life on the relations and separations between age, authorship, developmental disability and death.
Eugenic thinking is often coded into regularly repeated flexible phrases like ‘high-risk’. The ubiquity of such phrases gives the impression of clarity and inevitability. Their underlying elasticity means they can stretch enough to cover the needs of the person who invented the phrase, while assuring people with similar characteristics that they won’t be affected. Mel called this glamour:
Unfortunately, a lot of people want to be fooled by glamour. It makes them feel safer and more secure. It makes them feel the world is more predictable.
Those of us who have to live with the fallout have other ideas.
And she asked:
How do you make anyone care what’s happening to people like you? People who are invisible beneath all the glamour thrown on top of you?
Like a joke, glamour has multiple dimensions. However, while a joke is a way of surviving, glamour – by making us invisible – can kill people.
Image by Jr Korpa