I spent half my honeymoon in France in a wheelchair thanks to a skiing accident that left me with a fractured tibia and a torn ACL, and so I have an interesting perspective I’d like to write about. I’ve never been physically disabled before, even in this minor, temporary way. There’s something very different in experiencing an obvious, visible disability and experiencing an invisible disability, and I would like to explore that topic.
Having a wheelchair for five days got everyone’s attention. Everyone looked at me. Even now that I’m only on crutches, everyone wants to comment on it, everyone offers to help. Strangers go out of their way to open doors, and they look at me with sympathy. People constantly want to help, sometimes to the extent that it’s annoying. For example, I could wheel around fairly well in France, to get to the buffet line. I was capable of putting a plate in my lap, filling it with what I wanted, and taking it to my table – except for some stations which were too high for me to reach. While it was kind of endearing and adorable (and sometimes useful for when it was crowded) to have my husband get me food, sometimes I just wanted to get it for myself. Then when I would try, I’d have people trying to help me, trying to do everything for me. It was bittersweet in a way. I appreciated the help, but I just wanted to feel less like a chair ornament. Sometimes, people helping me felt as if they were robbing me of the one thing I could do for myself.
Then there was another side to this. We decided to go visit the village in Chamonix, France, where we were staying. My husband pushed me up hill, both ways, through the snow and ice so that I wouldn’t be stuck in the one building of the ski resort – something that I’ll always love him for. But it was kind of humiliating, to be perfectly honest. To not be able to do something as simple as travel a few blocks and get there by myself. I literally could not have gotten the wheelchair through those conditions on my own. My husband had to lift the wheelchair up over obstacles like ledges and snow mounds multiple times while I sat there feeling worse than useless. Every little bump or imperfection on the sidewalk was suddenly a big deal and a potential trap.
I thought it would be better when we got to the village, but I found that the majority of the shops and chocolate stores and such had ledges or steps to get into the buildings, and no ramps. The weather was beautiful at least, and the scenery was breathtaking, but there’s something truly humiliating about wanting to get a souvenir and having to wait outside the store like a tied-up dog while my husband went inside and brought things to the window to see if they were what I liked. I felt as if I were wearing a big neon sign telling everyone, “LOOK AT ME. I’M HELPLESS.” Whenever I saw a store that didn’t have steps to get in, it was a massive relief, as if I could take off that sign for a little bit. There was one place the owner saw us doing our little “look through the window and give a thumbs up or down” routine, and she helped my husband lift me up into the store, which was very sweet of her. Though, still, even when I was in that store, I could navigate very little. Things were a bit tight, and while I did manage to get to the corner where the souvenirs I wanted were, there was a second half of the store completely inaccessible to me on the second floor. And the counter-top to pay at was way higher than I was. It’s a strange, very uncomfortable feeling, because I really don’t want to have to ask for help (thanks to a mix of pride and social anxiety).
That brings me to something interesting – help. In a wheelchair, it’s obvious to the people around me why I can’t do something. There is a clear physical barrier explaining to everyone why I will not be climbing stairs. That’s the difference between visible and invisible disability, I think. I don’t need to explain myself to get help. If I want water, I can ask whoever is around and they jump to attention with, “Of course, no problem.”
I’ll tell you a secret. I can technically get water on my own. I figured out a way, for when I’m alone in the house. It involves scooting on the floor on my butt, takes a lot of effort, and more time. But I can do it. I technically don’t NEED the assistance. But no one around me would deny me assistance. They’d snatch up the cup from the floor if they saw me, and say, “Oh no, please, let me help you. You don’t need to do that.”
No one does that for invisible disabilities. In fact, even for physical disabilities that aren’t super obvious, our society far too often denies assistance. For mental disability, there’s even less understanding.
No one sees me staring at a phone number and instantly snatches it out of my hand saying, “Please, don’t hurt yourself over this. I’ve got it, who do you need me to call and what do you need done?”
Invisible disability is just that, invisible. And because it’s not instantly obvious why someone might need help, sometimes it’s ignored. At my busing tables job (which I can no longer do due to not being able to walk without my crutches), I told them before I was hired that I was not going to answer the phone, period. I don’t do phones because I’m autistic. I still got requests while I was there to both make a phone call and answer the phone. The reaction to my flat ‘no’ was, as far as I can tell, annoyance. I’ve tried explaining to people before the level of anxiety involved in phone calls, and why it’s such a big deal. People will often say things like, “You really can’t just pick up the stupid phone and talk for less than a minute?” I say, “I’m autistic, phones are difficult for me” and then I get handed a phone anyway because apparently the cure to autistic problems is to, “Just get over it.”
And you know something? I do it sometimes. I do make important phone calls. I am capable of it if I write out a little script first. I set up my own physical therapy appointment at a place I’d never been to, talking to a woman I’d never met, because I had to. It is the autistic equivalent of scooting along the floor on my butt with a cup of water in my hand. The difference is, no one’s going to take the phone out of my hand.
Visible and invisible disabilities are different. They’re treated differently, they feel different, they are just different. But there’s some major similarities. The biggest one I want to draw attention to is that they both need to be treated better by society.
People in a wheelchair should not get stuck outside of buildings like animals waiting for their owners.
People who can’t make phone calls and get a job to avoid jobs requiring phones shouldn’t be handed phones.
The world understands visible physical disability, but I don’t think it does enough to accommodate. It sort of looks on with pity, occasionally tries too hard, and looks away when it realizes that not much can be done in that moment, and it’s easier to ignore. The world pretends invisible mental disability is a thing that can be overcome with a walk through the woods, yoga, and a new diet, like it’s something that doesn’t really exist and accommodations for it are just suggestions since there’s no obvious physical necessity.
These attitudes need to change. There needs to be more than understanding and awareness. In America, or at least in South Florida where I live, I’ve noticed it’s far more wheelchair friendly than where I was in France. But still, I went to a restaurant and noticed that the path to the wheelchair accessible bathroom was extremely narrow to the point of just barely being manageable to someone experienced in navigating with a wheelchair, and half of it was blocked by a row of stacked baby high-chairs. That can’t be acceptable. But it is, because most people are able-bodied, and it’s not their concern.
I think empathy is the key. Inclusiveness, accommodations. If someone in the airport needs a wheelchair, don’t take them to their flight and dump them out into the waiting room for two hours alone. If they need to use the restroom, they could be trapped, and then you’ve humiliated them (luckily, my gate was directly across from the women’s restroom and I had my husband there to assist me). If someone’s autistic and needs noise canceling headphones at work, don’t tell them it looks unprofessional or anti-social and forbid it. These things actively cause people pain. Different kinds of pain, but pain none-the-less.
Be mindful of others.
That’s part 1 of my series of honeymoon blog posts. Part 2 coming up when I have energy again.
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