Just a note: I will not directly answer any negative comments towards me. I do not find that practice constructive in any way. But I did want to give some thoughts.
The one thing I find interesting about the negativity is that most of it came from my words being misunderstood–that I was saying a child was not a blessing. That couldn’t be further from the truth. I, personally, find it difficult to view a disease / syndrome / disability (all terms which have been put forth as commentors as the “correct” term for DS–all which have been negated by others) as a blessing. But something that is not a blessing does not mean it’s a curse. There’s a big area in the middle, in which exists the cards we have been dealt in life. Some are positive, some are negative. Sometimes what one sees as a positive can be viewed as a negative by others and vise versa. For me, my struggles with diseases and genetic stuff are just part of who I am–they are not the defining factors for who I am.
Diseases / syndromes / disabilities exist in that middle area, for me. I don’t understand how anyone can view it as anything more positive than that. As one person wrote: sometimes someone who has been diagnosed with cancer feels it’s as blessing because it gives them the opportunity to find out things about themselves they otherwise would not have. So very true! We are thankful for the character we find in ourselves which is sometimes spurred by an adverse situation. But I do contend that the impetus is still less than positive.
I have been accused of hiding behind a blog and that I’d never have the courage to get up on stage and share my thoughts. This couldn’t be further from the truth. I make my living primarily as a touring musician and as a writer / performer of my own stories and essays. In fact I just finished the run of my fourth solo show, which centered around the struggle I face being a gay Catholic. This blog is often my sketchbook of words and thoughts–things that stick out in my mind when I read them, hear them, see them, experience them. Being on the road so much it’s much easier than writing in notebooks which can get lost (and have), or in miscellaneous files on my laptop that could be gone if my laptop dies (it has). Later, I’ll go back and take nuggets of ideas, either of my own or what people have said, and turn them into a presentable piece. As I wrote the original post, the idea of a story concentrating on why I separate my own struggles with disease / syndrome / disability from the definition of my self was forming. Now it has morphed into something else. A story of how questioning one blogger’s string of three words turned into 36 hours (and counting) of personal attack by people I have never met, because I disagree with their vernacular. And, in turn, how their negativity was a reaction to my own vernacular. When, really, at the end of the day, the majority of the issue is a misunderstanding.
I’ve also been told in no uncertain terms that I have no right to talk about DS since I am not a parent of a child with DS, nor do I have it myself. This is true. But in my mind, you can substitute in any minority–be it racial, ethnic, sexual, medical, genetic–into what I said and I would still stand behind it.
There’s also something very lonely, I’d imagine, about feeling that the only people who have the right to talk about your situations or can understand in any way are the ones who are going through the exact same thing. I do not know what it would be like to be called the “r” word, or to have my child called the “r” word.
But I know what it’s like to be called “gay”, “dyke”, “fag”, and a host of other less accepted terms when I reach for my partner’s hand on the street.
I know what it’s like to not understand sarcasm due to my Asperger’s.
I know what it’s like to be referred to as a “knuckle-dragging primate” by a woman I was in a relationship with for a few years (because it’s “funny”, she always said) because I had scoliosis surgery at 13 which prevented my torso from growing, but my arms and legs continued.
I know what it’s like to not be allowed to participate in swimming in 7th grade gym glass because I wore a back brace, and the teacher’s solution was to have me squeegee the pool deck and locker room so others wouldn’t slip–while the others were all still there.
I know what it’s like to be stripped-searched in a European airport because the metal rods in my back set off the metal detectors at airport security and language barriers prevented me from effectively communicating that the metal was in my back.
I know what it’s like to be pulled over by the cops on suspicion of drunk driving after one saw me begin puking after leaving a bar in the middle of the summer because I have an intolerance to heat due to Graves’ Disease, and there was absolutely no alcohol in my system.
There are many more, but I’ll add just one:
I know what it’s like to be misunderstood, personally attacked, and assumptions made about my attitudes, my IQ (which is higher than a shoe), and who I am as a person because of something I wrote, without any regard or questions as to where or how I may have formed my opinions.
Situations over which we have no control are the ones which define our character, more than anything else. Those are some of the truest words I have heard.
