“I don’t want to ride that tart-cart.” This is a new one for me and something I heard in a meeting of professionals and educators. I’m sure my eyes widened and my body stiffened but I don’t think anyone noticed. Maintaining a professional demeanor is important to me, though I often have a difficult time hiding my emotions. I’m a work in progress. To be fair, it was used as a quote of a middle school student. However, it was thrown out there with the kind of cavalier attitude of a “nudge-nudge, wink-wink, we all feel that way too, don’t we?” Well I don’t. This person didn’t know that I have a son with Down syndrome and I’m sure they would feel badly for having said it, had they known. However, it shouldn’t take knowing that there is a person in the room who has a child with an Intellectual Disability to not use such disrespectful and hurtful slang. It also indicates a casualness about the use of “retard” and its many derivations that go completely unnoticed by most people. I highly doubt that had a student used the “N-word,” she would have chosen to directly quote it in a meeting as a way to empathize with students who were embarrassed to ride a chartered bus that happens to be small. In the general populace, I’m not so surprised to hear terms that are outdated and hurtful any more. It still stings, but since I can only impact the people in my own life, I’ve come to a place where I can generally let comments (that aren’t aimed at my son, specifically) wash past me. But when I hear Doctors and Teachers and Administrators use language like this (and others like “SPED Kid,” “short-bus,” “THEM”), with the ease and matter-of-factness of saying the days of the week, that’s a different story.
But before I got too outraged, I stopped myself. As little as five years ago I wouldn’t have thought twice about that comment, probably would have laughed and most definitely had said worse. So I had to stop myself and grant the grace, that I hope all the people I have offended throughout my life, have granted me. I’m so lucky and humbled to now be on the side that knows better.
And then I get mad again! People who are in positions of authority and power have a duty to know and be better. Doctors who are still giving out old and inaccurate data to expectant mothers of children with Down syndrome? Unacceptable. There is some debate about whether the termination rate for prenatal diagnosis of Down syndrome is 90% or 67% but either way what we do know is that since the advent of prenatal screening, the population of people living with Down syndrome has been reduced by 30%. (Side note: the non-invasive prenatal test has only been in use since October of 2011, one month after my son was born, and I can’t imagine that is helping matters.) Why? Old, outdated information being disseminated by Doctors who should know better. I still hear Doctors who regularly refer to our kids as “Down’s Kids” rather than as a kid with Down syndrome (person first language is important because none of us wants to be referred to as the sum of our limitations before we are people) and I’ve heard horrific stories of mother’s-to-be being told that their child would basically have no future. There are still many doctors who don’t think people with Down syndrome should be eligible for organ transplants should they need them because they “can’t live the kind of life the rest of us can.” In 2015! We aren’t talking 1960 here. Educators who throw around slang like “tart-cart?” Not acceptable. As the educator, you have a duty to model respectful behavior to your students and help them understand that having a first amendment right to free speech doesn’t mean that what you say has no consequence. How is my son ever going to be given a fair shot at a quality education if the people running the schools still think of him as something others can openly ridicule? How am I ever going to convince these same people that my son deserves to try for a diploma rather than “certificate track him” at an early age with no option for the kind of academic classes and high expectations the rest of the kids just receive as a right?
But then I go back to grace. It's so difficult. I often wonder if my penance for being hurtful to others in the past is to spend the rest of my life granting grace to those who have not had their eyes yet opened to the world of people living with Down syndrome. They have not seen the determination to achieve that we have. They have not known the full body hug of a child with low muscle tone that just melts into you. They have not seen the smiles and joy at achieving what so many people said they could not. They have not been transformed by the unconditional love and acceptance of a person like my son. So I will grant grace and atone…and fight like hell to get my kid, and others like him the health care, education and respect they deserve.