“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the general populace, I’m not so surprised to hear terms that are outdated and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.
Thank you Amanda for writing this. I was not familiar with the term. And if i get the opportunity to, keeping ones self mindful of gr
ReplyDeleteace is damn hard.
Thank you Amanda for writing this. I was not familiar with the term. And if i get the opportunity to, keeping ones self mindful of gr
ReplyDeleteace is damn hard.