“Am I Disabled Now?”
The answer might not be as simple as you think. Here’s how one woman with fibromyalgia came to embrace the term. by Hannah Hoskins Health Writer
Becoming disabled isn’t quite as straight forward as you might think. It’s not like you wake up one day and someone hands you a disabled parking permit. It’s a process, which is often slow, and sort of sneaks up on you so quietly that you find yourself asking questions like, ‘Am I disabled now?’ It never occurred to me that a person—and by person, I mean me—wouldn’t actually know if she were disabled. I don’t really know what I expected, but it definitely involved something official and some paperwork that classified me as such, preferably with a big red stamp. What really happened was so much less glamourous.
I was diagnosed with fibromyalgia nearly four years ago. But when I was still in no-diagnosis land—that time when you are very definitely sick but no doctor seems to know what to do about it—I was not the bad ass you see today who loudly shouts about the inequality of ableism. I was someone who was struggling to walk more and more. And I was also someone who was frightened to tell my employers how much I was struggling in case they thought I was lazy and unfit to work. My friends at work were doing their upmost to help me hide the fact that I couldn’t manage the stairs, and I basically glued myself to my office chair and used it as a self-propelling system to get around. Or as some of you might rightly be thinking, a make-shift wheelchair.
Unlike many people when they are first dealing with these types of things, I was lucky enough to already have a chronic illness bestie with whom I could share all my woes. She acted as my personal Yoda while I came to terms with my sickness. After seeing me completely unable to get around properly when we were out at a restaurant, where I clung to every table just to get across the room, she gently suggested that a walking stick might help. Now despite the fact that I was latching on to anything and everything that could possibly hold me up because my legs had checked out, it never occurred to me that a walking stick was something I could use. That was for disabled people. I was not a disabled person. I had a chronic illness, they were different … right?
After some light teasing and more than a little goading from her, I finally caved. If I wanted to get around without falling on my face, I was going to have to get over myself and get a walking stick. Surely it would be more embarrassing to fall on my face in public than it was to be seen using an aid for old people? I remember buying it was like some secret mission. I was terrified of going into a store walking on my own—even though my partner basically had to prop me up so I could make it—only to come out brandishing a walking stick. I thought people would chase me down the street to tell me I was a faker. At the time I was so worried about what other people thought, I didn’t realize the worst critic was the one in my head. (I also wouldn’t fully realize until later that this fear was rooted in ableism, or the wide-spread discrimination against disabled people, that causes the belief that all disabled people must look and act a certain way.)
The packaging on the walking stick was yet another barrier to get over. It had a lovely looking older lady on the front but to me it just screamed, “See this is not for you, you aren’t disabled!” And then there was the first time I used it in public, which I will never forget. I was so frightened to let go in case people saw that I could hold my body weight on my own for a few seconds. Every stare felt like people were judging me. They were thinking, “She’s too young for that” or “Look at that faker.” Thankfully, unlike many in our community, I didn’t get any negative comments. A few people asked why I needed it but once I explained, they seem satisfied enough with the answer (it was only later I learned this was information I didn’t have to give).
Even as my confidence grew, I received a true diagnosis, and I told my boss I had fibromyalgia, I still didn’t see myself as a disabled person. I was just someone who used a walking stick occasionally, just like someone might use crutches for a broken ankle. We don’t consider those people disabled. Although I got the usual questions of "What happened to you?" (nothing, I have a chronic illness) and "So are you in pain all the time? Like even now?" (yes, that is the very definition of chronic). Nothing very eventful happened after I disclosed my status, other than a lot of blank stares when I said "fibromyalgia." This was before Lady Gaga had it and people knew it as a thing. Mostly it just confused people, especially when I didn’t always come in with my stick.
It did get more complicated when I would have to change jobs. (I worked in TV at the time, which is mostly contract-based, so I was the new girl every few months.) Even if one employer was really good about it, the next one could be terrible. It wasn’t until a new employer casually asked if they would be able to tick the "has a disability" box on some paperwork that it even occurred to me. I remember being completely surprised by the question. I had never thought of myself as someone who was disabled. I couldn’t be, could I?
I actually had to Google “What makes you disabled?” It was only then that I learned that the definition the U.K. government uses is “You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” Similarly, in the US disability is defined as “a physical or mental impairment that substantially limits one or more of the major life activities of an individual” by the Disabilities Act of 1990 (ADA). And that stopped me in my tracks.
My illness was long-term, and it constantly had a negative effect on my ability to do normal daily activities. Hell, I needed an extra hand to even get my knickers on! The process of realizing that I was disabled and could use that word was almost the same as learning to use my stick. It was secretive at first. I tried it on close friends and family to gauge their reactions. I still felt like someone would call me out. No one had handed me a piece of paper, and it had to be more official than me Googling the term. Didn’t it?
But the thing is, it’s not. No one hands you that disability parking permit and sends you on your way as an "approved" disabled person. No one will really tell you how to do this at all. That’s why you find such strong communities online of other people all wondering the same thing. You might be sitting here wondering about it now. And that’s ok. Like I said at the beginning, being disabled doesn’t happen overnight. For me it’s a shorthand description that gets people to understand that I have access requirements. It carries more understanding than “I have a chronic illness.” (Remember how my colleagues were confused about even just the definition of chronic?) For you, it might be different. Disability isn’t the singular image we see in the media: Not all of us are in wheelchairs, some of us have invisible disabilities, some of us have different levels of disability on different days. Disability is as varied and different as humans are. You don’t have to fit the stereotype to call yourself disabled and that voice in your head that tells you, you are faking? That’s the voice of ableism.