Understanding Dynamic Disabilities
I mentioned this in my previous blog about mobility, but let’s do a deeper dive on what exactly we mean when we talk about dynamic disabilities.
When most people think of disability, they picture something permanent and visible. Someone who uses a wheelchair all the time. Someone who is blind. Someone who is deaf. But not all disabilities work that way.
A dynamic disability is a disability that changes over time. Symptoms may fluctuate in severity day to day, hour to hour, or even minute to minute. A person may be able to do something one day and be completely unable to do it the next. On a good day, they may walk without any assistance at all. They may work, socialize, and fully participate in activities they enjoy. On a bad day, they may need mobility aids, extra support, rest, or accommodations just to get through the day. Some days they may be able to go on a day outing, some days they may not be able to get out of bed.
For example, someone with Ehlers-Danlos Syndrome, Multiple Sclerosis, lupus, migraine disorders, chronic pain conditions, autoimmune diseases, traumatic brain injuries, Long COVID, mental health conditions, or many other disabilities may experience good days and bad days.
Speaking from my own experience with hypermobile Ehlers Danlos Syndrome, up until very recently, my disability was completely invisible, even though it impacted my life in many ways. I haven’t been able to stand for long periods or do much walking for years already. I can’t begin to count the times I have parked in a handicap space and gotten dirty looks, or even comments. I once had a man follow me into Walmart, and noticed he was following me to the pharmacy area. I was looking at something on an aisle and he approached me and said, “You know, the handicap spots are for people who are disabled. You don’t look disabled to me”. I gave him a stern response and he went away, but I was shook, embarrassed even. At an event several years ago, I was watching a scene in the dungeon. It was a longer, intense scene and I was absolutely enthralled. I knew I couldn’t stand and watch for very long without ending up in pain, so I grabbed a chair that had been sitting against the wall, made sure I was out of the way of people walking by, and I sat down. A DM approached me and said, “the chairs aren’t here for observers, please put it back where you found it”. I had to explain to them that I am unable to stand for long, and needed to be seated. He relented and left me alone, but it was once again, very awkward and uncomfortable. And nearly - no probably every - event that I attend, if I am not using my chair in a particular moment, someone will say something to me like, “oh wow, you’re not using your chair!” or “last time I saw you, you were using your chair, it’s nice to see you up and about”. These are micro aggressions that are well-meaning, but harmful. These comments make me feel unseen, misunderstood, and they put me in a mental conundrum. Do people like me better when I’m not using my wheelchair? I must be more attractive when I’m standing and walking. And then I am embarrassed when an hour later, I am hurting and have walked too much and need to go back down to the vendor mart in my wheelchair.
The reality is that dynamic disabilities are real, even when you can't see them. And I might feel ok one moment, and then start to run out of spoons and need to use my wheelchair. Many people with dynamic disabilities become experts at adapting. They learn to constantly evaluate their energy, pain, symptoms, and limitations. They may use mobility aids sometimes but not always. They may need accommodations one day and not the next. None of that means that we’re faking it. It means that we’re doing our best to navigate a body that doesn't always follow the same rules from one day to the next.
The most helpful thing you can do is believe people when they tell you what they need. You don't have to understand every detail of someone's disability to respect it. Don’t comment on whether they’re using their mobility aids or not - especially when those comments are to celebrate that they aren’t using their mobility aid in that moment. If you see me and you’re wondering how I’m doing, it’s totally ok to ask. I might just respond with a simple, “great, how are you?” - or you may get an earful about how in that moment I feel like hammered shit and all the ways my body is failing me. Sometimes I am open to talking about it, sometimes I just want to exist in the moment and forget about my health challenges. It’s a crapshoot, so if you ask, be prepared to get an honest answer.
I was asked recently if I was up to talking about what hEDS is, and how it affects me. I am usually open to explaining how hEDS affects people, I am fine with education - especially in lieu of people judging and assuming and deciding for me what I need or don’t.
Whether you know why a person is parking in a handicap space, using different mobility aids, or using them off and on, the best thing you can do is remember this: Not all disabilities are static. Sometimes they move and change. And living with them for people means having to adapt ro a different body every single day. If one moment you see someone with a wheelchair or a walker, or cane, or some other mobility aid, assume that they probably have a dynamic disability and then treat them like you would anyone else. You don’t need to comment on their mobility, or acknowledge that they are doing well and not using any mobility aid. Because that may not be the case an hour later.
I was also asked recently if it is ok to ask someone about their disability. That left me kind of scratching my head. It depends. That can be different from person to person, but the most important thing is remembering that HOW you ask matters.
A good rule of thumb is remembering that disability is personal medical information. Nobody owes anyone an explanation. It can come off as intrusive and insensitive. At the same time, many disabled people, like myself, are usually happy to talk about their experiences when they're asked respectfully and given the freedom to decline.
Something like:
"Would you mind if I asked about your disability? If you'd rather not talk about it, that's completely okay." is usually much better than:"What's wrong with you?" or,"Why are you in a wheelchair?"
It's also worth asking yourself WHY you want to know. Are you trying to understand how to be supportive? Learn something? Make sure an event is accessible? Those are generally more appropriate reasons than simple curiosity about someone's medical history.
Many disabled people also prefer questions that focus on their experience rather than their diagnosis. For example:
"Is there anything I can do to make this more accessible for you?"
"What accommodations work best for you?"
"How does your condition affect you day to day?"
Those questions recognize that two people with the same diagnosis may have completely different experiences.
For people with dynamic disabilities, there's another layer. Sometimes they get asked to explain themselves constantly:
"You were walking really good yesterday."
"Why do you need a wheelchair today?"
"You don't look as sick as you are."
After hearing those questions hundreds of times, even a well-meaning question can feel exhausting.
My personal guideline is: It's okay to ask respectfully. It's not okay to pry or assume.
Ask with respect and compassion, and then accept whatever answer you're given, and remember that "I'd rather not talk about it" is a complete answer.
Curiosity is human. Entitlement is not. Disabled people are allowed to have boundaries around their medical information just like anyone else. Sometimes we just want to exist in the same space you’re in and forget about the fact that we’re disabled.
If you’re curious - look for a class from me soon at an event near you. :)
