A PSA from advocate Jasper Peach: “Disability doesn’t take a holiday”

As we gear up for another Christmas season with COVID, people with disability face the conundrum of keeping safe amid the festive cheer.

Can you feel it? The carols, the Kris Kringle, the excited chatter about Christmas holidays - yes, the festive season is upon us. For those of us in the disability community, this time of year can set off a spike in our cortisol production factories. Like clockwork, December one hits and I’m a walking tangle of stress and fatigue.

I was recently talking to a friend, Freya, who has a condition called inappropriate sinus tachycardia, which elevates her heart rate. She mentioned that Christmas was going to be hectic and she’d need to make space for many moments of lying down in a dark room, away from the festivities.

“Even among people I love and am excited to see,” Freya told me, “too much socialising can exhaust me, leaving me vulnerable to an episode of tachycardia [increased heart rate]. Even the threat of an episode sends me into a spiral of anxiety which just exacerbates the whole thing.”

Because Freya’s condition is “benign”, people often tell her not to worry about it. “But it feels bloody awful,” she says.

When families gather in one place to eat and exchange gifts, often, our disabilities become an annoyance that gets shoved aside, “because it’s Christmas/Chanukah/a work party/other celebration or gathering”. Last year, I wrote about the way I politely requested everyone to do a rapid antigen test (RAT) prior to combining in one space, and my brother opted not to come to Christmas instead.

How many of us have family members who will advocate for us, or plan events that consider our access needs? I’ve known and loved my in-laws for eleven years now, and it feels a bit late in the game to announce my disability rider, like I’m Aerosmith and need a goose, a xylophone and forty-seven peeled purple grapes (seedless) on ice to attend Christmas lunch. 

On reflection, I realised it’s not shame that stops me from asking for what I need, but bone-deep exhaustion. Everywhere I look I see inaccessible places, functions and celebrations. Poor ventilation and unmasked people are a terrifying combination for immunocompromised people – and the pressure to just look the other way for the day, or often weeks of get-togethers, is immense.

Another member of the disability community, Robyn, has described her frustration around festive celebrations to her husband’s family. Her doctors made it clear that the only way she would safely be able to attend a family lunch would be if everyone was asymptomatic, wearing a mask and outside, and RATs had been completed on the same day with a clear negative result.

On receiving this information, Robyn’s sister-in-law responded by pointing out that Robyn’s husband had been in a work environment indoors, with other people who were not required to take tests. So commenced the guilt tripping, with family members telling Robyn they “managed to get Christmas down to twenty people so you’d be able to come”. 

We’re all tired of the pandemic. I’d love to just chill out and get on the bubbly waters like everyone else. I’d love it if it wasn’t always my personal responsibility to shake up everyone else’s experience wherever I go with RATs, masks, open windows or outside gatherings. But disability doesn’t take a holiday just because the calendar says so.

It’s not just COVID risks that we push through. For people with Mast Cell Activation Syndrome, (MCAS), like Shannon, the holidays mean dealing with severe airborne allergies. Shannon describes how inhaling any allergens results in tightening of her throat that will continue if she doesn’t immediately remove herself from the situation and administer medication.

“It’s like walking into a party not knowing if someone is going to throat punch you, and then being called rude for leaving after being throat-punched because you don’t want to continue getting throat-punched to death,” she says.

Then there’s the emotional fallout of people who don’t believe in disability or accessibility. 

Reframing Facial Difference activist Bel Downes describes the absolute relief she feels at making the call to stay home this Christmas. “I’m actually looking forward to not being with a group of overt disability deniers,” she says.

Many disabled people would love to celebrate with family and loved ones - and life would be so much easier if these celebrations were adjusted for our safety and accessibility.

If you’re not sure what your disabled and/or chronically ill family members need, a really beautiful first step is a simple question: “What are your access needs for this gathering? I’d love to make it possible for you to be included.”