David Seymour's collateral damage

Ableism and Covid 19

I’m writing again! It feels so good to be writing again! I’m embracing it tightly - hoping that my shitty depression won’t snatch it away again. I want to say a huge thank you for sticking with me and supporting me over the last few weeks. Shit is hard but we are getting there. This post is close to my heart - I hope it encourages some compassionate conversation about ableism in the way we respond to Covid 19.

There was a period of almost a year when our eldest son wasn’t “vulnerable”. He’d recovered well from the latest surgery, his fourth or fifth since he was born, and he had managed to struggle through a common cold without hospitalisation. Life, had finally become normal for us.

He went to school. He loved it. He built an enormous group of friends, discovered a love of cross-country, started learning to surf, and began swimming. He had his birthday party at the pool - that would have been unthinkable the year before.

He had playdates and his first sleepover. He was six. For the first time in a long time we didn’t have to hold our breath.

Then he caught a tummy bug. Then he fell into a coma. He spent three weeks in hospital and was diagnosed with type one diabetes. He did not return to school for two months. When he did - it was for half-days.

All of the children in his little school wrote him cards. We had so many pictures and cards that they filled six shoe boxes. His best friend Billie visited him in hospital. I’ll never forget how gentle she was with him. When we allowed him a school visit weeks later, he was mobbed by his friends. They lifted him high in the air and squeezed him tight.

He ran onto the field with them and tripped. Immediately they surrounded him - “are you OK? Is it your diabetes?” Afterward a child I didn’t recognise came up to me and said “will you teach us how to keep Eddie safe?”

Tamariki understand.

David Seymour has a plan for Covid 19 apparently. He says: “We can’t keep living with the uncertainty that we could be locked down again at any moment.” This is a bitterly funny comment to parents and caregivers who constantly live in uncertainty. (I started a new job and two days later, my son was in hospital for weeks).

It won’t surprise you that Seymour’s plan involves the isolation of the “medically vulnerable”. It involves pushing children like Eddie back inside, into an endless bubble from which they can never escape from, because their mental health and their worth is apparently of little value.

“Children are anxious about missing school”, Seymour says, apparently discounting the hundreds of thousands of disabled and medically fragile children who would be removed from school completely if we were to only isolate the medically vulnerable.

“Medical operations are being deferred”, he says, without considering how we are meant to cope when we take our medically fragile children to hospital and ICU beds are full. Will my child be worthy of an ICU bed? Will his life be worth saving?

I could talk about the enormous contribution medically fragile, chronically ill, and disabled people make in Aotearoa. I could say my now eight-year-old son has raised more money for charity than David Seymour has in his entire life. I could outline the ways he’s contributed more to the community than David Seymour ever has. But the simple fact is: Nobody else is expected to prove their value in the way medically fragile and disabled people are made to. I think David Seymour as a person has not made New Zealand a better place, but I still want to keep him safe and if he was medically fragile or disabled his life would still be just as worthy as anyone else’s.

Covid 19 ableism is rife. Globally, disabled people and medically fragile people have been reminded time and time again that they’re ‘lucky’ to be considered part of the collective response to COVID-19. “Underlying conditions” is used as a medical slur now, a way of showing that a death isn’t that bad, that it is expected.

Anti-vaxxers and Covid-deniers spend a great deal of time talking about how ‘the only people who die have co-morbidities’. This has grown to include politicians using the same lines. We have all heard the inaccurate statement that “99.9% of people are fine”, as if disabled and medically fragile people are dispensable.

I have spent hours on the phone to parents of disabled and medically fragile children, trying to comfort them as they sob and say “it’s like they don’t care that my child will die”. One parent whose child passed before the latest lockdown talked about the ways lockdown extended the life of her daughter. Precious months together, thanks to a caring nation.

But now we’re told again, that the sacrifice of the healthy, to spend a few months indoors, is too much. It’s a bitter pill to swallow when you’ve watched your child wave to neighbours from the window for years. Or watched them on the children’s ward only interacting with nurses from a secure, sanitised room for months on end.

But here’s the thing - if we open up and chuck all of the disabled and medically fragile away in a place where Seymour and the “business community” don’t have to see them or think about them - you might just find out what it’s like to live on the outside looking in.

For a start, think about your workplace - every parent, everyone with a parent who is medically fragile, will be gone. They’ll need to be at home, care-giving. Make sure you add them to the welfare system (David Seymour loves welfare right?). Let’s not think about their mental health right now eh?

Now, add in every new disabled person who has complications from Covid 19. After all, amputations, kidney failure, dialysis, autonomic nervous system symptoms, extreme fatigue, PTSD, neurological problems, heart inflammation, multiple organ failure, and double lung transplants, are just some of what “healthy” people face after having Covid 19. Welcome to the world of disability and chronic illness, I’m sorry but you’re isolating now too. Soz that you supported that and now you have to do it! What a bummer.

“New Zealanders are ready to open up to the world, get back to school, get back to business, regain our freedoms, and live our lives to our best potential,” Seymour says.

This is what it comes down to right? Open or shut. Freedom or lockdown. School or no school. Business or no Business. Alas - it’s not so black and white, and that’s the issue here.

A lot of “healthy” people view life in black and white. You live or die from Covid 19. And if you die - it’s because you were “vulnerable”. They don’t see the inbetween. Those of us with disabled and medically fragile family live in the grey. We know what it’s like for your life to change in an instant, for no reason, and we don’t see health as a measure of worth.

We live in uncertainty. We are used to it. Have adapted to it.

When my son was diagnosed with another medical condition I was invited into that circle too - I was immediately given support, practical help, advice and awhi. I was in the grey again but I was held gently and softly by those who knew that life well.

If you must continue to believe lives are worthless in the pursuit of an imagined freedom, please know that in the world you’ve blocked out, we’re still here.

And should you one day wake up in the grey, we’ll be here for you. Even if you were never there for us.