“You’re So Lucky”

If you’re sick and/or disabled and have a non-disabled partner, how many times have you been told how lucky you are? I’ve heard it more times than I can count. Now, in the interest of full disclosure I should tell you that I actually used to hear this a lot before I even became disabled because my husband is annoyingly great.

However, I noticed something weird happening when I first got sick and had to give up work. People would come to visit me and in the same breath as asking how I was coping, they’d all tell me how lucky I was that my husband was being so supportive. Which confused me because, well, what else would he be? Then later, when I started going out in my chair, I noticed the look people were giving my husband as he pushed me around. You know the one - the smile accompanied by the little head tilt. You know, the “oh wow what a great guy for being with a disabled person” head tilt? The “he deserves a medal” eye squint? The curious “I suppose he must stay with her out of pity” smile? I’ve seen it A LOT. There’s also the shock when bumping into colleagues or old friends of his that haven’t met me before. The shock that this young, attractive, able-bodied man would be married to me, a *gasps and clutches pearls* DISABLED person in a WHEELCHAIR. It’s actually kind of hilarious watching them try to keep their faces composed and neutral.

Recently though, I’ve been thinking a lot about how f*cked up and harmful this is and how this attitude isn’t an individual one by any means. We all know by now that society largely still views us sick and disabled folk as ‘less than’ - less deserving of the same rights as others, less important, less desirable, less lovable and with less to offer a romantic partner. The pandemic has only emphasised this further. And I’d be lying if I said I hadn’t internalised this.

I’m so reliant on my husband now, and at times it’s led me to feel so much guilt at the burden I must be placing on him, as well as thoughts that he’d be better off without me. That he’d be happier with someone else, someone not broken. I have often felt so guilty that he is now my carer, on top of his own full time job, and that we can no longer do a lot the fun, active, outdoorsy things we used to enjoy doing. I have worried, in my darkest moments, that he might get sick of it all eventually, or begin to resent me for being such a weight around his neck. And so, when people tell me how lucky I am that my husband takes such good care of me, what I often really hear is how lucky I am that he didn’t leave me when I got sick. How lucky I am that he “puts up with me”.

But I’ve done a lot of inner work on this, and been empowered by lots of brilliant people I’ve met online to understand that this constant expectation for us sick and disabled folk to be happy accepting whatever scraps of kindness or care that people or society throw our way is absolutely horse turd and has to stop. Cos you know what? I *am* lucky - lucky that my husband is kind, generous and caring. But this is nothing new - I know he’s all these things, that’s why I bloody married him! I literally chose him for all those reasons. So I guess I am lucky - lucky I have such great taste 💅🏽.

Yes, my illness is hard on him as well but why is that the only thing I ever hear about my relationship? Why do I never hear anyone (besides him) acknowledge how lucky *he* is?! I didn’t suddenly just stop being the great bloody egg I am because I got sick. It’s changed a lot of things about how we live our life together, but I’m still me - the person he married, the person he fancies and loves to be around. Becoming sick didn’t strip me of all the qualities he loves in me. So how about telling me how lucky he is once in a while? Instead of always expecting me to be grateful for the fact that my husband, you know, loves me 🤷🏻‍♀️.

Caring for your partner isn’t exceptional, it’s expected. It’s what love is, I think. I mean, it was literally in the vows we made when we threw that really expensive party a few years ago. And care in relationships always works both ways - it’s how relationships thrive. He cleans the house and washes my hair, I give him scalp massages when he’s stressed and make sure he eats enough fruit and veg. Why is one more admirable than the other?

I know why really, it’s because we’re all programmed from birth to believe that our entire worth as human beings is tied up in our productivity. But this is such harmful, capitalist, ableist bullshit that we have to stop inflicting upon ourselves. Being disabled, sick and housebound doesn’t make me any less valuable a partner to my husband. Being disabled in any way does not make you less worthy of being loved and desired.

We have to change the way we view being cared for. It’s not a character flaw. We all need care in some form - whether you’re sick and disabled or not. Our non-disabled partners do not deserve bloody medals for being with us. We are all, as my good pal Nina Tame likes to remind us, a bunch of bloody disabled sauce badgers and they are lucky to have us in their lives.

🦡💫