My Disability Is Dynamic
Maybe the media has led you to believe that all disabilities are visible and static. Disabilities caused by chronic illness can be anything but.
The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa.
And when I talk to people with chronic illness, lots and lots of people tell me that they aren’t sure if they’re allowed to call themselves disabled. I’ve interviewed more than 60 people about their experiences with chronic illness and I hear different versions of this same idea over and over again: “I’m not sure if I’m disabled enough. Some days I can exercise and go to work and have a drink with friends without a problem, and some days I physically cannot drag my body out of bed.”
Two years ago, I was completely disabled by unknown toxic mold in my house. I could barely walk to the bathroom, let alone walk to the corner store. When I needed to travel, I had no qualms about asking for accommodations and booking an airport wheelchair in advance. Two years ago, I would have said that I had an invisible disability. And a lot of people are doing a lot of great work to raise awareness about invisible disabilities and the prevalence of ambulatory wheelchair users, for example. But at the time I didn’t recognize that I also had a static disability: my needs and abilities didn’t really change much from day to day.
But now? It’s a whole other story. Now that I’ve recovered from the toxic mold exposure, my life has gone back to something like what I consider normal. Some days I still need help walking to the bathroom, but if I pay very close attention to my early crash symptoms and give my body a lot of rest, then I can participate in the world around me. I can walk downtown for a coffee or to buy groceries and I can dance at my friends’ weddings. But when people see me doing these things, they usually don’t recognize all of the attention and rest that have allowed me to enjoy those moments. And in those moments, I genuinely don’t need accommodations. My disability is no longer static, it’s dynamic. My needs and abilities are different from day to day.
And this distinction is important. In mainstream culture and media, “disabled” usually refers to people with static and visible disabilities. And when institutions and organizations talk about building a more inclusive environment, they’re usually talking about providing static accommodations like ramps and closed captions. And so if I tell somebody that I am disabled, I must explain that not all disabilities are visible and also not all disabilities are static.
Before I go any further, I want to be really clear about something: we need better disability representation and more accessible environments across the board. I don’t mean to suggest that folx with static and visible disabilities have it easy.
But dynamic disabilities come with their own challenges.
Lots of people become chronically ill long before they find the disability community. And so lots of people who become chronically ill don’t feel like they can ask for accommodations if they don’t need them all the time. If I’m not sure if I’ll need a wheelchair next time I’m at the airport, am I allowed to book one in advance? (I am allowed to, but this is a conversation that I find myself having over and over again.)
This is particularly tricky because we often need to ask other people for accommodations. And that creates a whole cascade of worries like, “will my boss think I’m lying if I ask for accommodations but don’t use them every day?” or “will somebody yell at me if I don’t have a mobility aid with me but I still sit in a designated accessible area?”
Things get even trickier when we talk about accommodations themselves. A few of my podcast guests have been stymied when I asked them to imagine what accommodations would be needed to create their ideal work environment. For people with GI conditions, unlimited and private bathroom access is hugely important. For people with fatigue, being able to work while lying down might be the only thing that makes work possible. And for people who experience cognitive impairment (that difficult-to-define thing we call brain fog), flexible work hours are imperative.
All of these accommodations are dynamic, and in order to ask for them I might need to convince a healthy person that I really need them. And if my disability is also dynamic, then I’ll need that person to believe me when I explain why I only need my requested accommodations some of the time.
But that’s because I do need accommodations some of the time. I am chronically ill and I am disabled. In order to move through the world safely, I need to think about my body’s needs all of the time. But on low-symptom days, I’m able to navigate the world like an able-bodied person. My disability is dynamic. My experience of disability is valid and more common than you might realize.
If this post resonates with you because you also have a dynamic disability, I think you might like my open letter to “problem patients.”