Thursday, 02 April 2009
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People first!
Okay guys, this morning I think it was apparent that that one innocent comment really got under my skin. Again, I realize the person meant no harm, but it really got me to thinking how little we as a society know when it comes to relating with someone with a disability. I include myself in that statement because even now I can find myself saying the wrong things. If I of all people stumble on my words; who is to say the President won't be next. Oh you know I had to go there.
I have always been very open about discussing the fact that Emily has Down syndrome. Sometimes I think I talk about it too much because the last thing I ever want to do is make her disability her indentification. The fact of the matter is; Em does have Down syndrome. It is not what makes Emily who she is anymore than my being wonderfully witty and a fabulous writer makes me who I am.
My best friend and I discuss things like this often. Her daughter has Autism and much like me; she doesn't want that to be how she identifies her. However, these things have to come up at times. J is terrified of the dentist and while she is a thirteen year old young woman; mentally she is around the age of four. Thus, when my friend takes her into a new dentist she struggles with how to get the point across to the staff that they are not dealing with your typical thirteen year old. While she doesn't want to make an excuse for J to act up; the reality of the situation is; J relates to the world as a much younger child than her age. She must be handled in such a manner.
I will always have to tell any dentist that Emily has CHD. Due to her repaired heart, she will be required to be on antibiotics before most appointments due to the higher risk. I will most likely have to explain that she also has Down syndrome. What I will not do is introduce my daughter like this; "Hi, this is my Down syndrome, congenital heart defect child; Emily. I realize that it sounds ridiculous, but all too often, that is how people look at her. I would never introduce a friend suffering from divorce as "this is my dear soon to be divorced because her husband is an ass friend, Jane". So why in the world should Em's disability be the first thing people comment on?
I think the answer is not that people say such things to be mean or rude, but because there really isn't a good idea of what to say and what not to say. I do not get offended at much, but there are a few things that make me kind of twitch. So, in the interest of making our world a more acceptable place, let me give you a few of those followed with a bit of a twist to help you see my point.
Em is not a "down's baby". She is a child with Down syndrome. I hear more medical professionals use that phrase than any other person. Would they really like me to introduce them as "this is dr. bald head with bad breath?" I seriously doubt it.
When first hearing of Em's disability; "I'm sorry" really just threw me. I understood the sentiment, but we had this beautiful little girl that was the light of our world. Yes, it was a really difficult first year, but I wouldn't have traded a moment of it for anything. It has made us all the people we are today. If someone had really wanted a little boy and gave birth to a little girl, should I say "I'm sorry" instead of congrats? I don't think so.
Again, not much bothers me and in the grand scheme of life I don't even mind those two things that much. I just really believe that knowledge is the first step to acceptance and I find myself in a position to share a bit of the things I have learned these last few years.
A really great article about putting the person before the disability can be found here. She gives some wonderful alternatives that will put the person first. We do not suffer with Em's disability; we embrace our loving, beautiful daughter and thank God every single day that we were blessed with her.
Sorry guys; I know this gets old, but it was on my mind. Thanks for indulging me.
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Comments (9)
It was very well written. Thanks for sharing that with us. I'm not sure I've ever thought about it that way, and wouldn't have seen the wrong in saying "down's syndrome baby", but that makes a lot of sense.
@Luv2BMama@xanga - While I personally don't have a huge problem with that one; when put into a context that is more the norm, you can begin to see how we are using a disability to define the person. I have been guilty of it myself, often.
Do people really still refer to her as a 'down's baby'? I think that would bother me on so many levels - including the fact that she isnt a baby anymore!
At least on here, you do a good job of showing who she is. Even though she has Down Syndrome, that is definitely not the first thing I think of when I think of her.
@der_lila_Stern@xanga - Yes, she is still referred to often as a "down's baby". She is very much a toddler, but I still hear it. I wasn't kidding when I said I hear it from medical professionals more than any other person.
new person:"Oh, this is the down's baby?"
me: Um, no, this is Emily. (sigh)
I am pleased to read that her disability is not what you think of first. I really try not to make it a huge issue. She is my beautiful little girl that just happens to have Down syndrome. I know here I write a lot about it, but only because I feel comfortable talking to you guys about it. I just love y'all.
Two things I never would have thought of saying. And I think you have right to be a little ticked when it's a medical professional. Me: "'Cuse me? If they didn't teach you to read in med school, I think we should be moving on..." Honestly, you should be able to read A.) her name and B.) her condition...along with C.) recognize some of the outward markers for it. If you can't do that? I'm afraid I don't have much faith that they your degree didn't come out of a Cracker Jack box.
I agree with Sarah; when I think of Em, I immediately think of her waving her hands infront of Blues Clues like any other little girl.
Ange, you always have so much power in your words! I was having a similar discussion about some things in my family the other day and you took the words straight from my mouth! I have always thought the term "downs baby" was ugly and disrespectful. A baby is still a gift from God, no matter what the details are! They grace us with their presence in our lives and should be treated as the blessings they are! When the triplets were little a lot of people treated him differently because of his heart defect. Some of them may have gotten irritated or angry but I made sure everyone knew he was just the same as the girls. Ugh, I just don't have the words I want tonight!
I so often say that most people are just plain dumb. I know it sounds mean but they certainly act like it. If only the world would just use the intelligence it has!
Love this entry
@Madre_Pequena@xanga - Thank you so much. If I can make one person think before they speak then I have done some good. People just don't get that a health problem does not make a person different. Good for you that you made people realize your son was just as special as the girls.
@filtered_sunlight - You almost made me cry. It just makes me feel so great that you guys think Emily first not Down syndrome. I shall stalk you more often now.
I'm with April and Sarah, I often forget that Emily has down syndrome. Her life shouldn't be dominated by labels, especially by the doctors you are trusting with her care. I think you are doing a wonderful job raising her to be herself, not her condition. Â
@TornadoChaser - Thanks, that is the goal. She is just an amazing child that deserves a fair chance at the world.