Breaking The Mold: Not Your Average Gimp!

CONTENT WARNING: Some colorful language may be used.

[[NOTE: I’m back! Sorry I disappeared for a bit, but I’m heading back to school this Fall to fulfill a few prerequisites before plunging into a Masters program and trying to prepare has sucked up time and energy. From here on out, the goal is to post once weekly for the blog, but I might throw in a few surprise postings when you all least expect it. So, now that you have an idea of how my blogging schedule will work (hopefully!), let’s get to the good stuff!]]

When you think of someone with a physical disability, what do you picture? What do you think this imaginative person’s life is like? What do they do for a living? Are they active in their community? Do they play sports or travel regularly? Do they have a significant other? Children? Are they helpless, a shut-in, a victim of circumstance just barely getting by in life? The list of questions can go on endlessly, but the point is to become aware of your own personal assumptions of disability and the stereotypes that you, knowingly or unknowingly, have bought into at some point. For those that know me on a personal level (more than just a ‘hello’ on Facebook or a cordial greeting at a family gathering or social event) or have received other forms of exposure to this type of disability severity, your mental image of a physically disabled person is probably a whole lot less stereotypical than, say, someone who has had absolutely no meaningful exposure to anyone with significant physical impairments in their life thus far. From personal experience, I can say that the vast majority of people in this world have not had that meaningful exposure to those like me, and thus, continue to perpetuate outdated, if not purely offensive, stereotypes of what ‘disability’ is supposed to look like and represent. Those stereotypes then lead to assumptions and those assumptions show themselves through words and actions. While I acknowledge that all minority groups struggle with dispelling stereotypes and blatant ignorance that surround themselves and their communities, society has generally become more educated about diverse groups of people. However, ‘disability’, particularly the kind that looks scary and overly-complex (like mine), isn’t one of those minority groups that people take an interest in learning about.

So, what do you think that means for me? Essentially, it means that there are a bunch of people out there who still believe at least one cliché about being in a wheelchair and paralyzed. It means that people like me are constantly insulted through presumptive questions and statements that come out of able-bodied folks’ mouth so effortlessly that sometimes I am in awe of the ignorance out there that is still alive and well. For the sake of giving others the benefit of the doubt, many people probably don’t even hear how their words come across, but nevertheless, that doesn’t make it acceptable or more easy to swallow.

I have a temper. As in I get thoroughly upset about things that are close to my heart and I internally must talk myself through those feelings in order to keep my head from exploding like a 4th of July firecracker. However, for the most part, I am great at letting things go that bother me intensely and not allowing myself to go apeshit, BUT, there’s an exception to this rule… The fastest way to piss me off is to treat me like I’m ‘sick’, like my life can’t possibly be as full or worthwhile as any of my able-bodied counterparts, like I shouldn't want or strive for the same life-goals that the majority of this world strive for, purely because I am paralyzed and require a ventilator and feeding tube to keep me here. Treating me like the stereotypical ‘cripple’ or assuming that my entire existence has consisted of living in my hospital bed shut away from the world like a hermit crab is definitely the best way to ‘light my fire’ from 0 to 100 in a nanosecond. That image isn’t my reality, never has been, but it’s a lot of people’s perception of me upon first glance because it has been socially ingrained in them. I can’t change that fact (at least not alone), so instead of feeling constantly offended or flustered by interactions with folks who lack disability ettiquette or accurate knowledge, I try to make it as light as possible and allow myself to have a hearty chuckle. If I didn’t practice this regularly, I’d probably already be in a psyc ward. 😊 Some of it is quite hilarious after you get through the cringe-worthy factors. Let me share a few encounters and you can form your own opinions.

Medical professionals are very good at being insulting without being aware, particularly nurses. I can go on and on about my views on the nursing profession, but I will save that for its’ own topic. I will say that nurses tend to look at me and right away they see someone who is ‘textbook’ ill and decide to treat me that way. Just recently, I required a home health nurse to come to my home to document a small wound that stubbornly won’t heal. Well, she literally interrogated me about my disability, my lifestyle, and basically everything aside from the wound which was the only reason she was here in the first place. Her tone of voice was super condescending when talking with me as if I was mentally retarded, and that tone didn’t waver even when she saw my university diploma. Instead, she said, “Aw, you went to college? Good for you.” She insinuated that folks in my capacity don’t actually pursue an education. (Many do.) Sorry that I screwed up that stereotype for you, lady. She also proceeded to ask if I get out of the house, why I don’t have nurses caring for me, and an array of other personal questions that had nothing to do with her job. I’m not an object to be observed. I’m a human last time I checked, an adult human at that, but she made me feel like I was just a bit less than that by disregarding social rules about privacy and human-to-human decency. If I had been an able-bodied woman sitting on the couch inhaling air without assistance, would she have pried and projected her own assumptions onto me? Probably not.

They aren’t alone in the stupidity though. These types of comments come from a variety of folks from other parents of disabled people to relatives who just don’t ‘get it’. Apparently, the fact that I have a university degree and have traveled quite a bit is a shocking revelation for parents in the ‘disability’ world. I’ve lost track of how many parents have approached my personal attendant to start comparing their kid’s life to mine and then have a goofy flabbergasted look on their face when they find out that I was never in ‘special’ classes, that I actually ENJOY being active in society, or that I went to college. This shouldn’t be an unusual thing, it should be expected just like it is for the ‘phyisically-typical’, but it’s not…and that’s sad.

Additionally, I have people come up to the person with me (nobody talks to me directly because I’m not supposed to be able to talk) and say something like, “Bless you for caring for her” or “I used to be a caregiver so I know how tough it is.” Okay, let’s analyze this for a moment… That is a great compliment for my caregiver (I think), but, hot damn, it’s pretty shitty for me. Gosh, am I that much of a burden? I hope not. I’m a fun, worthy human to be around just because, too, right? And, while most of the time I’m with my caregiver when this is said, what if these people are saying this to a friend who isn’t necessarily with me because it’s their ‘job’? What if I am with someone who is just with me because they enjoy my company? I know it’s a huge shocker for a lot of folks, but I know many people in wheelchairs who have friends and some even have romantic partners. *insert sarcastic gasp here* So, every single time someone says something like this in front of me, what they’re really saying is that someone in my capacity can’t possibly have any interpersonal relationships with the ‘abled’ outside of a caregiver dynamic. Those types of outdated ideas are heavily embedded in society and come out in some of the strangest ways, sometimes through insinuations and other times through blatant statements. This is a more extreme example, but I have been told through social media that people on ventilators shouldn’t ever expect to find a life-partner or soulmate or whatever you want to call it because apparently, being on a ventilator means we’re on the brink of death, and nobody wants to get invested in someone who’s gonna kick the bucket sooner than later. Aside from the hurtful factor of this statement (which I overcame quietly), it’s just not at all accurate. Like, I have been on a ventilator for about 13 years and I’m still alive…surprise! Yes, the ventilator means I’m more fragile than the average person, and it might even mean that I have a higher percentage of dying younger than ‘normal’, but it definitely doesn’t mean I’m on my way out right now. Though, comments like the one mentioned above, sometimes make me want to… get the hell on out of this ableist universe FOREVER. (But, I’m not a quitter, so no worries!)

If you have been following along this far, you’re seeing how people formulate ideas about people in my specific predicament based on inaccurate presumptions and super outdated understandings of what it does and doesn’t mean to be ‘sick’ or prominently disabled. I shouldn’t have to constantly be defined by my disability, but that’s the reality. And it sucks, especially when I know that I am the furthest thing from being that ‘poor-helpless-socially awkward-shut in/object of pity’ version of the ‘gimp’ that so many people have in their heads. Grrrrrrr!

Be aware of your own internal misconceptions about disability. We’re not all the same, and many of us don’t want to be the object of your pity or be made to feel like we’re less than ‘normal’ through your oddly phrased questions and presumptive statements. Always think before speaking (in all cases really), and if you wouldn’t say it to a healthy, walking-person, you probably shouldn’t say it to us.

Thank you for taking the time to read this, and if you’re so obliged, please share this knowledge with others. Help me end the stigma surrounding visible physical disabilities…one share at a time! See you soon!