Saturday, October 10, 2009

Looking Back: In My Own Words

There are several posts that are near and dear to my heart. No matter when I read them, I feel the same emotion I felt at the time that I wrote, all over again. For October, Ds Awareness Month, I think I'll share one of these posts each Saturday.

Thank you so much for reading.


Originally written August 11, 2008.

When I think of why all this hurts me, why I was in tears today, why something so small as a word can shatter my heart into the smallest of pieces, my mind doesn't feel like it knows how to put it all into words. I'll do my best.

I'm afraid. I know that in my little cocoon, where people love my daughter, where all I see is a cute little baby, carving out her place in the world, all is well.

What scares me is when I go outside my own private little world. The reason I even started this blog was to help me to start being less afraid to confront the realities in life. It honestly is working. I'm much more open, more honest, and it's like, "So what about Ds, let's have a snack," more often than not. But deep down I'm still scared. I'm scared about when she gets older. And I'm not even talking that much older. I'm talking like, next month. I mean when strangers start to notice that my toddler isn't toddling...that she looks and seems a good 4-6 months younger than she really is. And that's when the comments will start...and I'm afraid of how I'm going to (not) react. I'm afraid that I'm not going to know what to say and how to say it so that I'm educating and not alienating. I want other parents not to feel pity, but to say, "Wow, she's my friend and that's her baby, just like this is my baby, so I'm going to make it my goal to teach my children to treat people that are differently-abled in a way that I would want anyone to treat them." It's a simple lesson really, but one that, obviously, many people truly don't know. Or at least they don't live like they do.

You know what else? You know what else scares me? There are statistics out there that say that 85-90% of women who find out their unborn child has Ds choose to terminate. I find myself looking around rooms and wondering how many people, when faced with a diagnosis, opted out. It's a crappy thing to wonder, but I know that most people in the world don't want to be where I am.

I feel like I'm rambling and I probably am. I'm just so frustrated.

The bottom line is that I know several things. I know what it's like to be Black. I know what it's like to be a woman. Because of these two things, along with other circumstances, I've face adversity, prejudices, etc. But I wasn't a Black woman with Down syndrome. Not only will my daughter be faced with n*gger and b*tch, but also r*tard(ed)? That's a lot for me to swallow.

I know there are many, many people in the world who don't "get" why calling someone or something "r*tarded" is a problem. For them, I want to break it down from my perspective. This is coming from a friend, a sister, a daughter...a person with a sense of humor and a knack for one-liners...a person that is well-read and has seen the world...a person who is educated and has spent time running the streets...I think I'm pretty well-rounded. If you know me, you probably do too, so keep that in mind as I explain.

I grew up in a place where "r*tarded" is slang. As a matter of fact, just a couple of weeks ago, at that work conference I had, a young lady from DC was telling me about how her school handles graduation ceremonies and said, "My school is so r*tarded." (I bristled but said nothing.)

Let's examine what she meant by that.
Any of these would easily fit that sentence.

The difference between what young woman said (the word that cuts me to my core, that which I now know as "the R word") and the term "mental retardation" is that the latter is based on a medical diagnosis, a medical diagnosis that my daughter will have attached to her for the rest of her life. When physicians, therapists, and other specialized professionals use "MR" in the proper context, I can accept it. I don't have to like it, but I will accept it.

Still, I can't help but hear that when people use "r*tarded" or "r*tard" as an insult or a swipe at something, that they are also calling my daughter, and those with that same diagnosis stupid, ridiculous, backwards, and idiotic.

Who am I to say what words someone can use? I'm not out to censor my friends, family, and the general public. But what kind of friend, sister, daughter would I be if I allowed people who care about me to continue to do something that unknowingly hurts me so much? As much as I wish it were, it's not an overnight process to change your speech patterns and I know that. It takes effort and practice, but most of all it takes a mindset change to realize that what you're saying hurts people in a way that no other word can. Why isn't that enough to commit to making a change? To maybe have it stop with you and not tolerate it from your children, friends, or your children's friends. It's not about being politically correct. It's about taking the smallest of efforts to keep from causing unnecessary pain.

I cried today for the little girl I read about who got beat up by her peers just because she has an intellectual disability. I cried today for the child who was told to pick up another child's trash because that's all he was good for. I cried because I'm scared my precious baby is going to be treated like that one day. I cried because one day when she's old enough to understand, she's going to hear that word, and it may even be lofted in her direction, and then she will cry, knowing that she's done nothing to deserve it.

So, yeah, I know it's only a word, but I hate it. Please stop.


Lacia said...

You know, I could have written this same post, almost word for word, except not near as eloquent and to the point. I too have the exact same fears as you. I worry for all of my kids because of their race mix, but I worry for Kaia because she's got Ds mixed in as well.

I also worry about her getting older. Every age range had it's own set of worries. Like how you mentioned that it will be more noticable when she's not "toddling" like other toddlers. Now that she's 5, I worry about how much longer she will be in the "cute" phase. I mean, she's always gonna be cute to me, but when will others stop referring to her as cute?

AZ Chapman said...

hi this post comes with bad news. I am not going to the buddy walk today but I can not wait to see the photos

Evelyn Parham said...

As Lacia said, "I could have written this post," because I have had the same thoughts, feelings and fears.

I've been in a setting where people made jokes like (short bus, special, etc)--my daughter was not present-- and I didn't say anything..I felt hurt. Too hurt an shocked to say anything. I was very hurt because those people knew about my daughter, but didn't think twice about what they were saying.

I enjoyed your post!

Lisa said...

Chrystal, that was a beautifully and passionately expressed post, the first time and the second time. I share so many of those same feelings. Sometimes I wonder if the fear will every completely leave me.

Brady and Madi said...

I feel your pain on this. I stay awake at night thinking about when I was in school and how any special needs child got treated. It's horrible. I feel horrible when people use that word as well. I hear that word all too often in this world and it kills me. I don't understand how people can use it so freely without thinking twice about it.