Up until about a year or so ago, I didn’t call myself “disabled”. There was a stigma attached to that word that made me uncomfortable, so I avoided it. I think the thing that bothered me most, is I didn’t feel like I was qualified for the term, if that makes any sense. When I think about what it means to be “disabled”, images of wheelchairs, amputated limbs, and full paralysis come to mind. Here I am, standing on my own two feet, able to walk on my own and occasionally even go to the gym. It seemed insulting to “actually” disabled people to call myself disabled.
A lot of my perceptions of disability came from the way I was raised. I never would have considered my mom disabled, when she was in fact physically and mentally disabled after her car accident. If you were to use that word to describe her, she would become upset, even irate. That word, I was taught by her reactions to it, was bad and had negative connotations I did not want to have associated with my life.
Of course, now I know better than that. I reject the notion that “disabled” is a dirty word. Even so, it took me a long time to come to terms with that fact that I am disabled myself. I am not physically impaired 100% of the time, that’s true, but there are complications with my conditions which occasionally debilitate me, causing me to have to remain lying down for a while, or send me into a daze where I can’t even muster the willpower to get up and take my medications when my reminder goes off. It’s not a matter of choice. My body just does not always cooperate.
For example, I remember having a particularly bad day, so I laid out on the couch to allow myself to rest. My brain was so foggy and dazed, I was in a strange state of mind where I wasn’t exactly asleep, but I wasn’t fully awake either. I could think, but my thoughts were muddled and transient, coming and going in sometimes senseless waves as I drifted in and out of consciousness. I fell asleep for a while, woke up, and realized my full bladder was screaming for a trip to the toilet. I observed the thought and understood it, but my body did not act on it. I couldn’t translate the message of “I want to go to the bathroom” to “alright, let’s go”, so I continued laying there in a daze until I drifted back into sleep.
Some time later, I woke up again and realized that not only did I have to pee, but it was starting to hurt. I was conscious enough to have the thought that “hey, I could develop a bladder infection if I don’t go pee right now”, but I still was not able to get myself moving. I drifted back into sleep. When I woke up again, I was finally able to get up and hurry to the toilet to have probably the longest pee of my life. A couple days later, it started to hurt when I pee. Not long after that, it got bad enough for me to go see a doctor about it. Sure enough, I had a UTI. I knew it had to have been caused by that strange episode of exhaustion, and it frustrated me that I was so incapable of carrying out the most basic human function next to breathing.
That particular story aside, there are other aspects of my conditions that make the definition of “disabled” appropriate in my case. My vision itself holds me back because it is so much more limited than vision the average person has. Complications from this have deemed me incapable of operating a motor vehicle safely. I am not able to drive. In that sense, my condition has caused me to have a disability.
Low vision and episodes of extreme fatigue aside, my bones are so weak due to complications from my conditions that walking on hard surfaces, like a sidewalk, for long distances could risk bone problems. Because of that, I am restricted to walking on a treadmill or only in the grass, and it doesn’t take a disability for anyone to confirm that walking in the grass wears you out more quickly than walking on a paved path. That’s why sidewalks are a thing in the first place. So, those restrictions make me unable to experience life the same way that a typical person might.
Society puts such a stigma on disability that I was afraid to embrace that label myself when I was coming to terms with how much my conditions hold me back. Not only does the term “disabled” make a lot of typically healthy people uncomfortable, but a person like myself who looks outwardly healthy tends to get some negative feedback from more obviously disabled folks, and those who are permanently confined to wheelchairs or unable to move at all when we open up about the fact that we are disabled, and I think it’s important to acknowledge that this hostility exists. I understand it must be frustrating to have a condition that holds you back dramatically compared to a typically healthy person. I do. No “but” added to the end of that statement. It sucks. There are definitely people in a much more dire position than others, and they have to experience a very different level of disability than what I am faced with.
That right there a huge reason why I avoided using the term myself for so long. I was afraid I might be insulting those who are in worse situations than my own. I felt like calling myself disabled would somehow inadvertently invalidate their struggles, and I didn’t want to be “that guy”.
After losing my job and learning the extremely difficult lesson that my health does hold me back more than I was willing to acknowledge before it had gotten worse, I had to come to terms with the fact that I DO fall under the definition of disabled. I had to really work to get past the mental stumbling block that was making me feel guilty for admitting it to myself. I remember writing in my journal in big, red letters “I AM DISABLED” just so I could look at it written out on paper, and I followed that with a list of reasons why that statement was true. It took a lot of therapy and careful consideration on my part, but now I am at the point where I feel much more comfortable with the term.
Still, I have to admit that a sense of guilt remains when I think about my upcoming disability hearing. Even though I know and understand that I have multiple disabilities, having to go before a judge for a hearing to be officially labeled as disabled by the government so I can qualify for the assistance I need makes me feel like a fraud. I keep thinking about all the other, MORE disabled folks who can’t walk into the courtroom on their own. Even though I know that it’s bullshit for ANY of us to compare our hardships, fighting off that looming guilt is easier said than done and will probably take many more years of conscious effort to get past it.