As my husband and I come to our 2 year anniversary, we have been discussing opportunities for enriching the home life experience. Through our discussions I have realized a behavior I have acquired over the years that contributes to a minor wedge in my ability to cooperate with genuine companionship. I protect my right to independence at home, and not just a little. I make compromises when they maintain my home life ideal, which is to adapt my home to maximize my ability to do things without help. When I put this priority into words it sounds completely rational and totally justified. However, in practice, I end up putting myself first and only superficially cooperating with a small piece of any particular issue perceived to potentially threaten the independence I spend so much time cultivating. Relationships are a whole different ball game and a divergence from my initial game plan. I did not include compromise in my self-deterministic view of maximum freedom at home. School, community, work, and other people’s homes are where compromises need to happen, but my home is mine. Here’s the thing though… It’s not my home; it’s our home and we have equal rights, which means my game plan needs to change along with my life plan. I am not saying I am not going to be a stubborn negotiator, but I am saying I recognize my husband is entitled to negotiation.
Sometimes I lose myself. I usually consider myself to be fairly self-confident, but sometimes I trip and find myself flat on my stomach, facing the heels of others. In those moments, I have a dialog with myself that usually begins with self-doubt and frustration. I tell myself that my disabilities make it impossible for me to truly be an equal to all those other people who do not have disabilities. I begin to see snippets of myself in others, relating to the bodies and minds of individuals who I am perceiving to be non-disabled. I compare what they have versus what I have. The negativity spirals out of control. Suddenly, like a splash of cold water, I remember X-men are just comics and super heroes do not (yet) exist.
So much about being disabled feels like separateness, us – individuals with disabilities – versus them – individuals perceived to be without disabilities. Society tends to use the disability label to draw a line in the sand for yet another group of those who are qualified to “have” and those who are not. Disabilities are another label used in the hierarchy of society, most aggressively when supplies are scarce and competition to survive is highest. The most common example of this in my own experience is when people say, “Okay, if you can do this, then I can do it.” Inherent in this statement is the implication that anyone else can do what I can do because I am disabled. I am inferior to anyone who does not have a disability. Thus, I should be picked for the team last, because anyone else can do what I can do at the very least, and most likely more.
Hopefully by now you have read through enough of the posts on this blog to know I do not feed into this mentality. It’s true, I sometimes get into a self-loathing or insecure funk… usually using my disability as the excuse for my negative attitude. Nevertheless, I always snap out of it, because I know I have met enough people less capable in one way or another than myself. I do not let myself forget that, even if society wants to pretend it is not true. Society cannot hold up the facade forever.
By the end of my internal dialog I am reminding myself comparisons are not always useful or necessary. I have to make more difficult decisions for myself on a daily basis than a majority of the population. I have to plan ahead and know myself more thoroughly than most people. I know these realities and so I also know I am not playing the same character on in the board game as other people. Therefore, it just is not useful for me to compare my performance to other people playing a completely different set of strengths and weaknesses, paths and relationships. Other people are not hybrid’s of myself. They are apples and I am an orange. We are not growing on the same tree or even in the same geographic location, but we are both fruits.
You might be questing this separateness mentality I use to justify myself, particularly given I just got done saying separateness is social injustice. No, we are not running in circles here. The kind of separateness I use to acknowledge the differences of living with a disability is recognition that having a disability is a uniqueness. However, despite my disabilities, I am not entirely unique to other human beings. In fact, all I really want is for society to recognize that middle ground that defines me. I am nothing special. I am disgustingly normal, hardly interesting. I am not the best at anything, but I am not the worst at most things either. I am painfully average and so are you. You and I are not that different, a little different, but not exceptionally different. I just want society to acknowledge I am not inferior. Others are not hybrids of the disabled. Not having a disability does not automatically mean you are comparatively better to others with disabilities in all things. I mean, if you are a hybrid human, then you should probably have the YouTube videos to prove it by now.