One word can have a wide variety of meanings, depending on the person you ask. Part of the point of this blog is to talk about that which is generally ignored or taboo. In our society, the only people allowed to talk about their illness or disability are either small children held up as inspirational tales and the elderly complaining about their woes. The fact that I am willing to not only talk openly about my illness and disability and illness and disability in general, but even joke about them, embrace them, even have a sense of pride, this places me outside of the societal norms.
I don’t think I’ve ever been inside the societal norms, even before we knew I was sick and long before I knew I would need a wheelchair. I’m different, my brain works differently; even when I tried, I always seemed to cross the line when he came to my words. I have come to a point where I embrace my frankness about my illness and disability. I don’t shy away from the uncomfortable details, I will smile and make sarcastic jokes when strangers start asking rude questions, I will not lie to make people bodied people feel better about my being sick.
The point of this post is twofold. First, is to make clear that they will not shy away from an uncomfortable subject. Nor do I promise continuity between my posts. One day you may find a post about the political situation people with disabilities find themselves in, and the next day you may find a rant about my digestive system and why it won’t work. You have been warned — among other things I have ADHD. Keeping track of the conversation is hard enough, continuity day to day on the blog just is not going to happen.
My second purpose is to define a few terms that I will use which may be misunderstood, may have vague or wildly varied definitions, or may even be somewhat controversial. Words and language are important to me, so I wish to be as clear as possible.
I tend to use one of three terms to define my sexuality. The one I most often use is “queer.” I sometimes also used the word clear to refer to the entire LGBQI-etc community. I know one point this term was only one of insult, and some still consider it so. Please know I mean no insult when I use the word. In fact the second term I use to describe my sexuality is how I usually define the first — “not straight.” I usually use these two terms because they are umbrella terms, and I don’t like being put into a box. At one point labels were important to me, but I have discovered they are more of a hindrance in my life that help. The third term is the easiest to understand, and the one I get most often to nosy straight people– “married.”
The other part of terminology that is important to me that I will do my best to use is “person first language.” This means that I will try to always say a person with a disability, or a person has autism. For too long the label with a disability became the only identifier to the rest of the world. I’ll have a whole other post just about the names and labels given to those with a disability. If I try to do it all now, the post would be someone you’d stop reading. If I ever do not say things correctly, I apologize now. I, too, am learning from a childhood of insensitive and unintentional harmful speech.
It is also important to know, perhaps most important, that I am sarcastic. I am sarcastic about many things, including and especially my illness and disability. I will make jokes, be impolite, and generally push the limits of what is acceptable speech about disability. I will not treat my illness and disability with kid gloves. It is my life, and I get to say what I want about it. That being said, I am saying it about my life. If I make a joke or use a term that you find uncomfortable or even offensive, please know I make such jokes only about myself. When talking about chronic illness and disability in the wider world, I speak with all seriousness and do my best to treat such a critical subject with the dignity that it (and we) deserve.
I hope this blog can help bring light to the issues that those of us living with chronic illness and disability face. I also hope to help build a Disability Community and Disability Culture. I still plan to have some fun with this blog. But if you have a problem or question or concern about how I use a particular word or language in general, I welcome friendly debate. Only by connecting to others can we truly begin to build a community.
PS — I use voice recognition software to be able to write this blog, and I try to catch all the errors. But if you see a sentence that simply doesn’t make sense, it means I missed an error, and I apologize.