[This is a warning. This is a harsh post. If you are looking for a light post, you should move on. I do want to thank (or blame – jk) Sam, for making me think and force this entry out of me.]
I read a lot of blogs. Everyone is unique. Yet, in the little community of autism, we are all tied together by a commonality, like a heartbeat or breathing. An autonomous thing that keeps us together, despite our infighting. We don’t talk about it.
I read funny, angry, bitter, beauty, sad, scary, and hopeful. I read about people who say:
Autism does not define me. I don’t want to be a “Debbie Downer”. I won’t see the world through rose-colored glasses. I am a clown. I am treated like garbage. I have been abused. Don’t view me as inferior because I cannot communicate like you. You don’t understand me.
Most seem to struggle with the dark side. I’m no different. I’m not a “humor” blog, by any means, but neither do I speak in dark or bleak terms, most of the time. I, like others, want to people to like me and return. Basic human nature.
But there is a reason I titled this blog as I did. When I first started, I did not know stats, or the “autism community”. I knew my voice and I felt if I could help just one person see something before I saw it in my own child, then I would have done what I set out to. I wanted to provide awareness through my “solodialogue”. How egotistical, eh?
On the way, I met so many people who walked in my shoes before me, were standing side by side with me, and who wanted to take the steps I took before them, that I was surprised, overwhelmed, grateful, educated, and strengthened. But, at the same time, I began to wonder where I stood. And daily, I still struggle with whether what I put on as a post makes me come off as a buffoon, a snob, or some other form of social pariah.
Humanity is strange, you know? Silly, I know, but I believed for the longest time, that the majority of people had beliefs similar to my own. As I write that now, I can’t help but laugh.
My first awakenings to the divergence of humanity came years ago when I began to practice law. I had to contact opposing counsel. He was a Harvard Law graduate. I prepared and made the call. The conversation ended. Within 48 hours, I received a statement that he swore, under penalty of perjury, saying the exact opposite of what I told him and lying on every single point. Welcome, Karen, to the practice of law.
I was shocked, disgusted, angry and appalled that someone could be so low. At the same time, my opinion of myself rose, because I realized that I liked that I was honest, trusting and real. Sure, I lied as a kid growing up, more times than I’d like to remember, on more subjects than I’d like to think. But, by the time, I reached the point in my life where it was my duty too, to make declarations under penalty of perjury, I knew the value of being honest, understanding what I said had meaning and promoting trust.
My naivete was drained that day, but no worries. I had plenty left over. It would be repeatedly drained over years that followed, to this day. We all want to believe that police, fire fighters, lawyers, judges, teachers, doctors and caregivers are honest and operate from a strict code of ethics that require them to adhere to the highest principles involving privacy, decency, respect, and compassion. And there are stellar examples of those people in every profession, in every walk of life.
But, where I’m concerned, those are the exceptions.
And even though we don’t want to say it, it is a part of every one of us within this disability community. It is like a gross, ugly thing that I wish I could rip from its core, burn and remove permanently, but I cannot. It is not that cute story, iPad app, a repetitive mantra, a head full of thoughts that won’t shut down.
Society values functioning, contributing members. If you have a job and earn a living you are valuable. You contribute money that will meet the needs of the rest of the pack. If you are retired, you have a pension. Splendid.
If you are disabled, young or elderly, weak, sick, infirm, or potentially of that ilk, the view is not so rosy. Sad but true, without ability to financially contribute to others, people are expendable to the rest. Did that sound harsh? That’s because it is. And no matter our efforts to educate, to force open the eyes of a majority to the values that this minority can and does provide, they will not hear us. They will not see, hear, look at, think about or process the value of a disabled or elderly person. I think that stems from humanity’s basic inertia, laziness, what-have-you.
Instead, they will offer institutionalization for the “hard-to-handle”, and, sadly, the option of starving an elderly person to death, labeling it palliative care rather than providing a gastro-tube and continuing life. Isolate and remove. Destroy.
For those of us who love others with disabilities, whether young or elderly, that is a stark reality and fear that we live with, that underlies everything we do and say. We don’t like to look into those dark places, over the edge into the abyss. To know that someday, if we are not there to fight, love, help, advocate, listen, oversee, prevent abuse, neglect, to prevent someone from taking advantage, no one may stand in our place. And so we look to each other to continue to fight, expose, right wrongs.
So, like it or not, when we read each other, and we bicker over acceptance, respect, help, cures, research, spreading the word, or not understanding, we are more united than we know. We are not the forest. We are all trees. See me.
Unite in our desire to elevate those we love and those who we are to a level where we receive respect and the basic humanity that a financially contributing world should give us and those we love.
Can you see me now?