We are not shown many examples of disability in the media, and the ones that we are shown are often portrayed as tragic, or in the realm of inspiration porn. People seem to have an idea of disability as being black or white or in extremes. Like, someone is totally blind or totally deaf or their legs don’t move. But disability is so much more vast than that!
I hear the current stats are that 1 in 5 Americans is disabled in some way. For many, that means chronic illness. Chronic illness can have all sorts of impacts on how people move through the world. Maybe they have to take medication. Maybe they have to carefully monitor their diet. Maybe they need regular treatment at a medical facility. Maybe they can’t stand up as much of others because their heart rate or blood pressure doesn’t respond well. Maybe they have to carry emergency medication or a way to communicate with strangers to help keep them safe. Maybe using an assistive device makes something in their life easier, or possible.
I have spent years now listening to the stories of strangers on the internet as they recount countless times that they have been hassled by strangers for using disabled parking spaces that they are fully entitled to (your doctor has to fill out forms to certify your disability for the DMV), harassed for using a power cart in a store and being young, being gasped at when standing up from a wheelchair to reach something.
Lately, I’m hearing another story as well, the one where someone’s loved one thinks they shouldn’t get a device that would improve their quality of life, wanting them to suffer through even if it means living a smaller life. Sometimes it’s a lack of understanding of their illness, sometimes an externalization of something the loved one wishes was not true. Sometimes even medical professionals act like it would be a failure or a character flaw, or they think the the patient is resigning themselves, not trying hard enough to get better, or will somehow make themselves more ill. None of this helps the disabled person who is just trying to improve their quality of life.
Visible assistive devices are difficult for many users to choose to use. They have internalized these messages, many of which are born of deep entrenchment in the medical model of disability. Many of us are introverts who don’t want the attention that it brings. And none of us want to be in a position to have to explain or justify themselves, and certainly not about the intricacies and challenges of moving through the world in our bodies.
The first time I went out in public with a cane was terrifying for me. I was so worried about how to navigate my professional life. My brain fog and cognitive problems were beginning to set in in a way that terrified me when it came to my job. I was an analyst at the time, and my job required me to engage in complex thinking and clear explanations of complicated data and processes. And I needed a cane because the neurological problems were also affecting my balance and gait, making me tired, and giving me pre-syncope. It must have been sometime around 2005 or 2006, and I had yet to be diagnosed with POTS or ME/CFS. I didn’t understand what was happening, and I was desperately trying to find answers. And I was afraid that I would lose my job if I was found out.
I’m also a private person (says the woman writing a blog post about her illness). I’m happy to use my life as an educational or supportive story for others, but only on my own terms and on my own time. I worked in a place that was theoretically very supportive of staff when things were going on in their lives, and where relationships were highly valued. But that doesn’t always translate to good boundaries or thoughtful interactions.
The days before that first day at work I practiced possible lines with my partner. Things I could say to theoretical questions I got asked. It helped me feel more secure, and gave me a little bit more confidence to do this hard and scary thing.
I will never forget a conversation I had with a colleague at the elevator. I was holding a laptop and files in one hand, racing to get to my next meeting. I was using my cane in the other hand to balance. We were both waiting. He looked me up and down and said, “What did you do to yourself?”
I’m sure to many people, this sounds like a perfectly reasonable question. But do you hear the blame in it? Not only have I been put in a situation where I’m being asked to explain myself and my body, I’m being told that it was my fault, that I’d done something to cause it. And the assumption was that I had an injury.
I don’t remember what I said. But I remember the feeling of it. And it felt awful. And it felt awful at a time that I was running to a meeting in which I had a significant role. A time that I was trying to prepare for in my head. But a well-meaning colleague had derailed me.
I don’t hold this encounter against the man. But it is a small example of the attention that anyone could have to manage anytime they go out in public with an assistive device. Since that time I have used a cane, a cane with a seat, a rollator, carried a camp stool to use as a footrest. When I was working, I had multiple ergonomic assessments to help support my illnesses, and had a special office chair, two ottomans in my office, and a wooden crate for a footrest that lived in a storage closet outside the conference rooms. I could occasionally be found lying on the floor of my office, maybe with my feet up the wall when I really needed my blood to go back up to my head. It was awkward, but it got easier. And I became incredibly clear that it was just what I needed to do to take care of me. I know some people talked about it behind my back. And I know a couple of colleagues though I was somehow faking my illness. But I was clear about me.
At some point I mustered the courage to use a mobility scooter at Target and at the grocery store. It was the only way I could still do my own shopping. I couldn’t stand very long without feeling faint, no matter how much water I drank and what medication I was on. I didn’t know at the time that ME caused people to draw on energy reserves that weren’t being replenished, and that sensitivity to sound, light, scents and chemicals was just a normal set of symptoms. But I knew that sitting down was the only way I could choose my own ingredients for the week’s menu.
Those scooters are hard to drive! And they make noise when you back up. And the aisles are narrow. And people leave their carts in inconvenient places. And they don’t move their bodies out of the way. And seasonal end cap and free-standing displays are practically an invitation to get knocked over when trying to turn 180 degrees from one aisle to another. Also, stores are full of people. And some of those people stare. And some of those people are people that you know, and maybe not the ones you wanted to run into. But it made something possible that I couldn’t really muster otherwise.
A little over a year ago I purchased a mobility scooter. I was trying find a way to get out of the house, and maybe walk my dog once in a while. And I knew I could no longer walk any distance. I was still letting my dog out to pee in the backyard in the evening, but friends had taken over the daily walks. Oh my gosh it was hard to go out around the neighborhood the first time! I live in the same neighborhood in which I worked. I could easily run into 350 former colleagues, or friends or neighbors. There I was, thinking about my lines all over again.
I was also dealing with something more complicated – operating a machine in a moderately hostile physical environment. I was learning the controls, experimenting with speed, surveying every uneven sidewalk, identifying every tree root, and discovering where there were no curb cuts. While wondering who I might run into, what they might say, what I might say back. It was daunting.
But it was also easier. I knew my scooter represented freedom. I knew it meant that I could go out with my dog, that I could see my favorite waterfall, that I could visit a friend on their porch. In fact, one day last summer I took my dog to a waterfall, said hi to a friend on his porch on the way back, and got to stay for an impromptu cookout. Without that scooter, I would have been home alone and isolated.
Disabled means lot of different things. Assistive devices are freedom and participation. We are not entitled to other people’s stories.