Tuesday, August 12, 2008

In My Own Words

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.


Jen said...

This is a great post.

It's funny. It's only when we venture outside our normal, comfortable, accepting circles that I get anxious about Evan's DS. It's when we're thrust into the mix of the general public (who I don't know and probably don't want to know anyway) that I start to be really self-conscious of it; that I start wondering about the stares or the second looks. And why does it bother me then? Logically, I don't care what these people think. I'll never see them again. But for some reason, I still get very self-conscious.

The transition from baby to toddler (if your child is not toddling yet) is hard. It becomes more difficult to ignore the diagnosis. More obvious that there are delays and differences. There are more questions, more stares, more attention.

None of this is new or helpful to you, I'm sure. But all of that just to say, I know exactly what you mean. You're not alone in this, that's for sure.

Michelle said...

You've said so much here.

I have such fears for Ruby - can we ever prepare her enough to be safe when she leaves our little cocoon?

That's why I love this online community. Not only am I not alone - neither is Ruby. She has peers who also come from wonderful, loving homes and will accept her just the way she is. And that makes it okay to leave the house - because people who understand, people who are accepting, they're out there, too.

And most days, I can remember that!

Fatimah said...

As a social worker, I have a whole new respect for people who have children that have disabilities. I have two kids on my case load with autism, one is severely autistic, and the other has aspergers. I also have a kid on my case load who is dx with schizoid affective disorder. Yes these children do get teased, but mostly by children who are not happy with themselves. I am not the expert on these disorders, but as a therapist, I will read book after book and review research, so that I can know how to effectively work with these children. I want to help build their self-esteem, so that when people tease them, it won’t sting them as much as it does now. I thank all parents like you and your friends for loving your children because it makes my job easier. When I work with parents who support their children, and love them in spite of what the world thinks they have a much better chance of being successful in life.

sheree said...

you inspired me to address the word today also...It will publish on friday. Anyway, it does suck. It needs to stop.

(((HUGS))) To both you and Malea.

Michelle said...

I think you said it all very well! Kayla is 5 but I still wonder about her future too, will she have friends, will she be succesful, happy, etc...I think we all go through those emotions when we have a child with delays/disabilities...it's just all unknown. Then you throw in hearing the "r" word everywhere you go and it makes it that much harder. Thanks for sharing your thoughts and feelings.

helen of troy said...
This comment has been removed by a blog administrator.
helen of troy said...

hey there girl! I snuck online at work to read your blogs! I love it!!!! They are such a perfect way to get your thoughts out, educate others, and find that connection we look for with other familes! I so relate with you on the subject of the "r" word. It hurt my heart so badly to hear it when I first started dealing with the fact that madi will never be intulectually at age level. I still dont like it. If it is coming from a stranger I really try my best to not let it get to me. If it is family or a co worker I will now simply look at them and they know my phrase "find another word!!!" It is ashame what a common word it is in peoples vocabulary!
I better get off the computer before I get caught...hehehe! Just wanted to say that your are an amazingly strong woman. Malea is very lucky to have you for her mama! There are some moms that when you encounter them you cant believe how they hold, never seeming to faulter. Never break down in front of anyone! Those moms that you think, wow how do they have it so together? The truth of the matter is those are the moms that keep the pain and frustration hidden from the world. I truly admire those moms that are able to advocate for their children, be strong and tear someone a new one (as I know you have. lol), if they need to. That can be a help to another family looking for awnsers AND can also share with others the vulnerability and frustration and sadness we all experiance. From the moment I met you I have truly admired how you can be so raw and real and shed tears and then follow it with a completely profound thought! Now thats a tough a$$ mama for ya!!! Not sure if that all came out how I wanted it to but I am sure you get it!gotta go and hope to see you at the next meeting!
Helen... and let go for that drink!!! girlee831x4@yahoo.com

Amanda said...

I think what you wrote here is so right on. I am so cognizant of that word (and, incidentally, I do not have a child with Ds.) You can bet that I reprimand ANYONE who uses that word around me. And I don't care how much easier it would be to laugh along or not say anything. It's not right.

Anonymous said...

Mama you tok the words out of my mouth. People don't understand the capacity of that word!

You look at how people use it and they substitute it to mean "the worst things".

My child is not: dumb, stupid, crazy, or an idiot.

She has differences. She learns in a different manner than most but...LOL...you will learn to see (as your little one grows older) they are FAR from "dumb".

The part that bothers me most is...I'm not the type of person that most would expect to get a "preaching" from but I do not tolerate that word. With so many young parents these days...it is fostering intolerance and making it more dificult on these sweet, sweet children that are so innocent; yet, suffer so much because they born "different".

I did my last preaching session on the train. LOL! I hate to do it but...sometimes I can't resist.

There was a "gentleman" that got on and boasted very loud how he disagreed with Palin for not aborting her child. Now, I was not a supporter of Palin but it TURNED my stomach.

Choice is choice but that child is here and definitely a blessing! My daughter is NOT a mistake! I was a teenage mother - she is NOT a mistake. I was proposed an amnio and declined - she is NOT a mistake.

It is HARD! HARD! Can I stress HARD!

My friends refuse to acknowledge her as MR. Her dad still uses the word and doesn't check his "friends" for using it - even in her prescence.

I am not ashamed of her being Mentally Retarded...I just KNOW the power that the word carries and I hate for her to think that her condition equates her to being stupid!

Thanks for this blog!