Warning: This is long and rambling.
A few years ago I lost my ability to walk. It happened in about the amount of time it takes to snap a finger. One minute I was walking, and the next minute I couldn’t. I never really thought of accessibility issues until I had one. It wasn’t until that happened that I realized how absolutely frustrating it was when someone parked in the handicapped spot at a store when they didn’t need to because they were only going to run in really quickly. I can’t tell you how many times I had to sit in the car while my husband ran in a store or another place because all the handicapped spots were taken up with cars that didn’t have passes for them, and everywhere else was too far away for me, so I couldn’t go.
I learned that I hated it when places didn’t have ramps, because I couldn’t go where I wanted to go and do what I wanted to do, and there was nothing I could do about it. I’d sit helplessly at the bottom of the stairs looking up at a place that might as well have been Tibet for all the good it would have done me. My husband would go up the stairs, take pictures of whatever it was that was up there, and come back down to show them to me. I’d pretend I saw whatever it was, and experienced it.
I had three extensive spine surgeries, and now I can walk again, albeit (very) slowly, and usually with a limp. I have lost complete feeling in my right leg except for the front of my thigh right above my knee, and two of my toes. I had physical therapy for a few years where someone would hold onto my hips, and another person would swing my legs while I held onto bars and learned how to walk again, somewhat normally, while only being able to feel two of my toes.
I have what is considered an “invisible illness.” And it wasn’t until all of this happened to me that accessibility issues started becoming near and dear to my heart. Now, to look at me, you’d probably not think that I had any sort of limitations. I usually walk without a cane (though on my bad days I still drag it out) because my physical therapist said that a cane would diminish the strength of my muscles, and I can’t afford that at all. I wear all of my braces under my clothes, so you can’t really see them. I have a little bit of a limp, and I walk pretty slowly, but most people probably don’t notice anything. They probably just think I’m not in a rush. You certainly never see the amount of pain I am in. I have become very, very good at hiding how things, like stepping up a curb, sometimes makes me want to scream. No one sees how hard it is for me to do simple things, like get dressed. It’s not something I just do; getting dressed has become an ordeal. It’s a torturous event.
Ehlers-Danlos Syndrome, hypermobility type, is super fun (/sarcasm font). Both of my shoulders dislocate if you look at them wrong. My right hip does some fun things that make life both painful and difficult, and now my left knee is blowing out. Navigating stairs, even two stairs, is just about impossible for me these days. Walking is hard. Sitting is hard. Standing is hard. And while most people can’t tell there is a problem, I have reached a point in my life where, if there are stairs and no alternative, I typically won’t go there (wherever “there” is). I’ll send my husband. He will take pictures of whatever it is I want to see, and I’ll pretend I saw it. It is pretty assured that at some point in my near future, I will probably need permanent mobility assistance. Until then, I have to take very, very good care of myself to prolong what little mobility I have as long as possible.
I’m not saying any of this for pity. I’m saying it because this is a personal issue for me. I fundamentally do not understand why accessibility issues are still a Thing. There was a problem at World Fantasy Con where there weren’t ramps for individuals in wheelchairs. I wasn’t there, but I read about it online, and I’m glad there was an outcry about this issue. If I had been there, I probably would have been in the same situation as the people in the wheelchairs. I wouldn’t have been able to get on that stage. I wouldn’t have been able to go there, so I would have stood around awkwardly or proxy experienced it through others who could go/do/experience.
In some ways losing my mobility in a second was a lot easier than slowly losing it over the course of a few years. It just happened in a flash, and suddenly I had to deal with a whole aspect of the world I had never had to really face before (If you ever doubt that mobility issues make life hard, try to navigate the Las Vegas Strip with a wheelchair. Just try. I dare you.). Now I’m watching my mobility slowly go, and unless I have my cane, I’m really the only person who knows there is a problem. In a lot of ways, this makes me a silent and passive observer to a world where I both fit and don’t fit at the same time.
The kindness of strangers often wins out and makes life easier. When I am out in public with my cane, people generally do their best to accommodate me when buildings and events don’t. If people know me and know my limitations, they automatically make allowances for me. I don’t have some issues, like problems with how wide doorways are, or having wheelchair accessible seating, but I did once, and I get it. Small things make life so much more difficult when you have a mobility restriction, and these small things often edge out valuable participants. By and large, people are always helpful, but there are still times when I have to say, “No, my cane isn’t part of a costume. I really do need it.”
The issue is that this shouldn’t even be a Thing anymore. There shouldn’t be a reason for someone to have to stay off a stage in a panel they are part of, at a convention, because the convention center/staff/whoever hasn’t had the forethought to think of a ramp. People shouldn’t be excluded because they were overlooked and/or forgotten. In situations like this, when the other panelists come down to the floor in a show of support and solidarity, they get huge props. But they shouldn’t have to do that because a lack of something as simple as a ramp shouldn’t be a thing that happens.
I saw a lot of praise this year about conventions that had sign language interpreters in attendance, and I thought, “Good. I’m glad that conventions are finally getting this accommodation, but what does it say about us that this is something to be praised rather than part of our normal convention going experience?”
That’s the thing that really irks me about this issue. Accommodation is still something to be praised rather than a normal thing. It’s an event rather than an occurrence. Furthermore, there are still times when there are problems and people get excluded or edged out due to these problems. The dialogue about this is still minimal in the genre. There is still almost no discussion about these problems until something happens and there is a small outcry.
The Americans with Disabilities Act requires buildings and events to accommodate those with disabilities, but this is sometimes forgotten or overlooked, and I hate that those with disabilities are often in that camp where the overlooked dwell. (To be fair, I’m sure the hotel was ADA compliant, I’m not sure the convention planners thought about it much). A huge problem, I think, is that a lot of people don’t consider many of these issues because they don’t fully understand them. Most people who aren’t in wheelchairs probably don’t consider how a simple impediment could prevent a wheelchair user from entering a room/moving around. And while I rarely think this is done out of malice, sometimes it really isn’t thought about extensively.
The there is a lack of awareness. If you don’t have a disability, then I think disabilities are typically a thing that happens to other people. I don’t think it’s something that gets thought of as much, or as often, as issues like feminism or racism, or many other -isms, but is just as important and it impacts a huge percent of the population.
Thankfully there are people who speak out when an injustice happens. There are groups online that focus on conventions and accessibility. People are becoming more tuned in. But there is still work to be done. There are still issues that need to be addressed. No one should have to stay on the floor because the convention didn’t think about getting a ramp to the stage. The fact that, in many places, these issues aren’t a priority is rather disheartening.
Recently there have been more discussions on these topics. I’m hearing about disabilities being represented on more and more diversity panels, and awareness is rising. Conventions are making it easier for individuals to find necessary accommodations, but this issue at WFC points out the fact that while we have come far, there is still a long way to go.