November 18, 2010
After thirty years of marriage, dinner conversation is no longer as lively as it used to be when we were still exploring the wonders of each other. It now revolves around Lauren, frustrations and problems, and the things we need to do but still haven’t gotten around to. The evening news is usually droning on in the background, creating another layer of issues and concerns about the world in general. So, when we have a “date night” my husband and I try to stick to subjects that are more positive, more about ourselves than everyone and everything else. That means that long silences often threaten as we rack our brains for anything scintillating or interesting to discuss. The other night, in desperation, I pulled out the tried and true, “If you had three wishes – what would they be?” For both of us, one of our wishes was that Lauren be happy and well cared for - for the rest of her life. I soon realized that neither one of us had said, “I wish Lauren wasn’t disabled.” Neither one of us had said, “I wish Lauren could speak, or walk, or didn’t have seizures, or anything else.” We simply wanted Lauren to live a good life.
Over the years, it seems that the professional, and not so professional, individuals involved in Lauren’s life either wanted to “fix” Lauren or marginalize her. Very few people in general, approach her, respect her, as simply who she is – challenges and all – a part of their world. If she doesn’t respond typically to them, if she doesn’t meet some kind of norm, she is dismissed. If she could not learn what she needed to learn in her first twenty-one years, then it is determined, that she never will.
But we all are a work in progress. No one on this earth is perfect. Very few couldn’t stand some degree of improvement throughout their lives. Yet, there seems to be some imaginary line beyond which people are judged too wanting, too imperfect to be considered a part of the mainstream of society and are subject to different rules.
I guess if I ever meet the magic genie who will make those three wishes come true, one of my wishes should be, “I wish the world would respect and value Lauren for who she is. ‘ Only then will the world be a place, where she can live a good life.