Why the summer break can be hard if you’re disabled

Disability advocate Elly Desmarchelier tells it straight. For many people with disability, the holiday season “sucks”.

You’re lounging by the pool, cocktail in one hand, plate of desserts in the other. You’re surrounded by your nearest and dearest after spending the day enjoying the surf before retreating to the family home for a feast. You’ll now spend the afternoon napping between reading your third book for the holidays and playing board games with the nieces and nephews.

You only need to open up any social media platform to see Nicole Kidman and Keith Urban embodying this Christmas spirit, with long strolls along the beach and photos in front of the Sydney Harbour Bridge on New Years Eve. Hey, good on them.

Anyway, that’s what the Australian festive season looks like, right? Well, wrong, if you’re talking about the majority of disabled people and those living with chronic illnesses. 

To start with, almost 40 percent of people with disability live in poverty, so it’s pretty hard to pull together a feast and buy the family gifts, let alone stock up the bar for cocktails when most months you have to choose between paying the rent, keeping the lights on or paying for vital medications. You certainly can’t do all three.

Then there’s the fact that family gatherings can be downright painful for many. And no, I’m not talking about sitting through another racist rant from one of your grumpy uncles. If you live with chronic pain, like I do, having to get ready for, travel to and then sit up for multiple long events can cause huge pain flare ups. Your physical pain might stop you from attending at all, which is particularly difficult when you know everyone you love is celebrating together.

Image: My family out celebrating NYE.

Add to this, at the time when we all want to sit back and do less, most of our regular support workers, allied and mental health supports take leave. As someone who is neurodiverse this can send me into a tailspin. All of my perfectly curated and necessary routines are no longer possible. Suddenly it feels like you’re fending for yourself.

I tell you all of this not to complain, but because while everyone is posting their perfectly filtered summer photos to Instagram (me included!) you might be sitting there thinking the last few weeks have been hard and maybe you’re doing something wrong.

We all want to enjoy this time with friends and family, but it’s okay to admit that you actually aren’t up for it, and that might mean you don’t have the stereotypical Christmas Hallmark memories the movies push on us.

Image: My one annual day at the beach, sitting in a beach wheelchair.

I want you to know that despite what the pics show, you’re not alone. The last few weeks have been hard. It’s not you. At this time of year people with disability don’t have the disposable cash others might have and many of us lose our regular supports, and that would make anyone’s life harder.

You’re doing well just to get through each day. Your time for rest and relaxation will come. It just doesn’t line up with broader society’s non-disabled calendar. That sucks, but it’s not your fault.

Next festive season, let’s make it a goal to look after ourselves by not trying to meet society’s expectations of what this time looks like. For many of us with disability, it would certainly make for a happier Christmas and New Year.