On unnecessary, ableist pressure

By 6th June 2021 June 15th, 2021 No Comments
I’m over reiterating this, and frustrated that it’s a conversation we have to have again and again. For some, the UK is opening up and returning to some form of normality. For people like us who are vulnerable or protecting the vulnerable, we watch with envy because the world is not safe for us. People who aren’t at risk and don’t get it don’t wear masks, they aren’t willing to get vaccinated. They broke lockdown to have raves, and they pressure our nurses to break shielding and safety rules.
It’s frustrating to have to remind ourselves and others: we don’t want to be in this position, we HAVE to be in this position. We’re strict with our bubble for good reason. If Mikaere were to catch covid, it’s likely to be FATAL for him. The last time he got a cold that turned into a chest infection we were fighting to keep him out of ICU. The resulting seizures were devastating. He suffered. The last time he went into ICU, we also ended up on END OF LIFE CARE in hospice. Mikaere catching Covid would be an unmitigated disaster for our family.
We’re not unreasonable people, you know? Everyone in our bubble lives by the same rules. We haven’t been out in the world for non medical reasons in I can’t remember how long. We haven’t seen our family, friends, the inside of stores, people on pavements in A YEAR AND A HALF. Sam desperately wants to run outside for the ultramarathon he’s training for, that’s he’s had to cancel twice. His sisters just had a baby that we can’t meet. I desperately want to see my friends but can’t. Kai is missing out on 90% of his therapies because extending our bubble is too dangerous, and has literally lost skills because of it.
We’re not draconian gatekeepers though. If someone genuinely wanted to join our bubble, it’s possible. They just need to isolate, get a negative test and agree to the same conditions we live with. A handful of close family/friends have isolated to see us, sometimes taking annual leave. We’re grateful our loved ones are understanding and happy to see us in a manner that doesn’t endanger Mikaere or put him at risk.
Going the other way though, we’re strict about keeping Mikaere safe. If a friend isn’t able to isolate we don’t see them. If we thought for a second one of our nurses was engaging in risky behaviour, putting Mikaere at risk, we’d immediately remove them from the package. That’s hard, because we rely on our nurses to get through every single day. We can’t be everything Mikaere needs and have to trust them implicitly to keep him safe.
We have to be that strict, that sure. The world is unsafe for the vulnerable like Mikaere. It’s even clear in the data: since relaxing the rules, accessibility has reduced, the daily positive test numbers are going up, and they’ve doubled in the last week. Mikaere can’t be vaccinated and the risk is high. So we stay in. We don’t go out (even though we desperately want to) but it’s WORTH IT to keep Kai safe.
Having to remind people over and over that our rules are there for a reason? That our rules are not to be “fought” against because of some minor insecurity or lack of patience? Blah. If you have never had to consider the actual death of a person you care about as a very real, very literal and likely consequence of your actions, you’re living in a world of privilege that not everyone has. And that’s not an exaggeration. That’s our life.
I mean, could you look at that beautiful wee face and decide to make his world a less safe place? I’m just so frustrated you guys. Why do people not get it?

Leave a Reply