There's been a lot of discussion about the word 'awareness' in the past week. Some think it's an outdated term that has fulfilled its usefulness. Some think that it actually hurts our efforts toward social justice. Still others, like me, think it's an important step in the creation of acceptance.
Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects, or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding. More broadly, it is the state or quality of being aware of something. In biological psychology, awareness is defined as a human's or an animal's perception and reaction to a condition or event.
Awareness without action is worthless.
An interesting fact about white people is that they firmly believe that all of the world’s problems can be solved through “awareness.” Meaning the process of making other people aware of problems, and then magically someone else like the government will fix it. - From: "Stuff White People Like"
*Before I go on, let me first say that by referring to the age of my son, or how long I've been advocating for inclusion by no means implies that I am insinuating "rank" or some self-perceived importance. I only use it to qualify my own experience.
I agree with a recent statement made by Patti (Saylor) Richmond: "The best training comes from relationships." I too began my journey of advocacy in the vein of what some would call "militant activism." I demanded that laws be upheld regardless of the personal fears or lack of knowledge of others. For example, when Josh was young, I was in the market for a daycare situation that was along the 45 min.-1 hour (one way) commute I made each day to work. One center was perfectly located. After visiting the center and interviewing the administrator, I was told that they were not trained to handle kids like Josh. I politely informed her that it was illegal for her to refuse my son based on his disability. (ok, I think I was polite, but ... it's been a while, ... wink). Anyway, I stood my ground and Josh was accepted on a "trial" basis. It wasn't long before the staff at the daycare decided that Josh needed to be put on Ritalin. Hmm.... They didn't believe me that he was in fact NOT hyperactive. It wasn't until I was able to produce medical records that proved I had him tested, that they unhappily dropped that demand. Not long after that, I arrived to pick him up after my work day and found him playing in the mulch. When I put him in his car seat, I noticed that he had a huge gash under his chin. They had not called to tell me. They didn't mention it when I got there. Josh needed 12 stitches in his chin, which he almost did not get because no one knew exactly when the injury occurred. Needless to say, I thought twice before "demanding" inclusion again.
I think, in that instance, I was the one who was "trained" on human behavior. You can legislate all you want, but laws don't change minds. The proof of that is in the civil rights laws we have already. Desegregation didn't automatically change opinions. If change did occur, it happened within the schools, between students who actively formed relationships.
I spent many years working for and demanding inclusion for Josh. It was painful and tiring. I couldn't count the number of phone calls I got at work, the nasty messages written in his journal, or the horrible things written in his IEP notes. I had to take several issues to the state level to get them resolved. And, looking back, what did he really get out of it? Yes, he was "mainstreamed" into a general education class. (Except for a few years in middle/high school) But, he didn't have real friends. He was never invited to birthday parties or dances. He didn't have a real "inclusive" experience.
So to those who say that action is needed, and imply that demanding inclusion, laws, or civil rights is more productive than awareness, I have to say I have my doubts.
One point that was brought to my attention that I do think is worth considering is that awareness is used in many campaigns about disease. Also, as our friends at "Stuff White People Like" so eloquently point out, some may be inclined to think that awareness is an end in and of itself.
Awareness for me, in this context, is not about pointing out a problem. When I say I support Down syndrome Awareness, I mean awareness of the fact that our kids are human. They are worthy. They are not a problem to be dealt with. They bring joy and happiness to their families just like any other child. I will admit that this meaning of the word may not be understood by people outside of our community. Unfortunately, people who don't have relationships with someone who has a disability will take the word, and the pictures, and all the efforts at awareness however they want. We can not control that. What we can do is continue to tell our stories, and share our pictures, as symbols to the world that our kids are loved. They matter. If one of my blog posts or pictures of Josh reaches even one person and makes them think for a moment the next time they see someone who has Down syndrome, then I'm proud. I'm sorry that some people think I'm hurting the cause in some way; but no, I will not stop. By sharing our story, and those of others, I believe it will only add to the conversation. I personally have tried the other route. I didn't work for me. The fight was not pretty, and in the process, Josh was a guinea pig for inclusion. We're still not there yet. At this point in my own journey, I believe personal narrative and allowing for genuine relationships is the only way to change attitudes. In my opinion, this starts with awareness.