Accommodations sometimes come with baggage

One of the trickiest things I find about being neurodivergent with a chronic illness is the amount of stuff you have to lug around with you, using a body that’s not made for carrying!

I dropped my daughter at her year 9 camp this morning, and as we drove up she started commenting on how little those around us had packed, becoming anxious about her own large bag. It reminded me of all the times I’ve travelled for short trips carrying large bags and had people comment “you know it’s only one night right?” “Did you leave the kitchen sink at home?” Whilst these comments are often meant in a lighthearted way, they can be really cutting.

For this camp, the idea is to challenge them and make it uncomfortable. They have 5 muddy activities planned, only one chance to shower, and they’re sleeping in tents. There has absolutely been some concern with her participating with her POTS and hEDS. So, we packed enough changes of clothes for her to start each activity fresh. We packed wipes, and spare shoes and enough clothes to deal with her temperature dysregulation. And we packed a full pillow, because sleeping badly could make the entire camp harder than it needed to be.

I often imagine there would be a huge amount of freedom in being able to travel light. You can throw a few clothes and a toothbrush in a backpack because you can reasonably assume you'll cope with the bed, the temperature, the food, the noise, the lights and whatever your body decides to do while you're away.

Perhaps packing for a trip is one time when our invisible needs become visible. All of the things we usually quietly do to accommodate ourselves suddenly have to come with us, and they take up space.

I think in general we’re getting better at formal adjustments through schools or workplaces, albeit slowly, but these accommodations are still so often treated as individual siloed things- you get 5 minutes more per hour for your exam, you can use a footstool, you can take a movement break. But so much accommodation of chronic illness and neurodivergence actually happens outside those formal adjustments, through dozens of small decisions and preparations that allow us to participate without our needs necessarily being obvious to anyone else.

It can also be carrying the extra layer because your body struggles to regulate its temperature properly, bringing your own pillow because you know what lack of sleep will do to you, having spare clothes so that being wet or muddy doesn't become a sensory barrier to joining the next activity, or bringing the food, medication and other bits and pieces that allow you to keep going. And these things take up space.

Perhaps this is part of the reason chronic illness and neurodivergence can remain so invisible. When our needs are well accommodated, other people often don't see them. They see someone attending school, going to work, travelling, going on camp or generally getting on with life; they don't necessarily see all of the planning and accommodations that made that participation possible.

But when we travel, some of that work suddenly becomes visible, because we have to pack it, and lug it around in a very large bag.

I don't want my daughter to avoid the mud, the tents, the activities or the challenge of camp. I want her to be able to do those things. Packing what she needs is part of making that possible.

Maybe we need to be a little less judging about how much someone has packed, and a little more accepting that accommodating yourself sometimes comes with baggage.