Friday, January 30, 2009

Fresh View

First of all I want to say thank you for all the kind words and the support in regards to my last post. I really hesitated to weather I should post that or not. Then I remembered the e-mails I have received where some people have shared with me that it seems like I have it all together, and I never have hard days. Well, I am only human, and I do have hard days. It is only fair for me to show that I have weak moments :)

I did want to talk more about the MR label.
If you look in the dictionary, "retarded" means delayed. I have no problems with that, Nichole is delayed, and therefore, I could say she is retarded. BUT, now a days, the word "retarded" carries a very different connotation. It is the most offensive word in the English language. It is degrading, repulsive, and used to offend people. This word, that refers to my daughter, is used in order to describe something stupid, funny, ridiculous, etc.

In my post on Health and Down Syndrome, I addressed this issue a little bit.

The only "R" word that a person with an intellectual disability deserve is the word "Respect." Next time your friend is acting silly, or someone does or says something stupid, please, do not say, "You are such a retard, "or, "That's retarded." When you say that, you are talking about a people group, a people group that includes my daughter, and they deserve the same respect that you and I do. Before you use that word, think about who you are referring to, what you are implying. Would you say, "You are such a Nichole." Or even more, would you use a derogatory name that is associated to a people group. No, you would not. Because you know that it is not appropriate, you know that it is degrading and wrong. The word retarded is the most offensive word in the English language. It is a word that is used to describe something stupid, something with a fault, something with a mistake, and it is said in expense of my daughter. These are the people that need to be respected, but most important, valued! Because they are God's creation, loved by God.

And this is the reason why it is so hard.

HOWEVER...

My friend Lisa helped me talk through this. Lisa has adopted four children with Down syndrome. When she has something to say, I really listen because I value her thoughts and respect her. She has walked this road a little longer, and four times :) Lisa also has a brother with Down syndrome and her sister has also adopted a child with Down syndrome. If anyone knows about life with Down syndrome, it is Lisa! You can visit her blog if you want.

Lisa challenged me, and this is what she had to say:

Just wanted to make sure you remember that your daughter (as well as the rest of our children) should be the ones who show people that being mentally retarded does not mean what the world has decided it means. They are wonderful because of their diagnosis, not in spite of it. Unfortunately, when people use that term in a negative way, usually they WOULD include our children in their stereotype...even if they knew them. That's why I say the term "mentally retarded'" is not to be avoided, it's a blessing that most people don't understand. Like the name Jesus Christ. Most people use His name in a terrible way, but that does not mean that His name is something to be avoided.

Our world puts so much emphasis on scholastic performance and ability. It's time that people stood up and talked about how people with mental retardation (or disabilities) are valuable, even without an assigned grade or diploma. Of course that probably won't happen until we get to heaven, but I do think our kids are here to show people that truth (even though most people will miss it).


I am challenged! She has definitely given me something to think about. I cannot say that I am okay with the label, it still bothers me, but hopefully I continue to grow and learn. Praise God for bringing wonderful friends into my life :)

9 comments:

  1. what a great challenge and a great new way to look at it! What a blessing Nichole will continue to be!

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  2. Reading of this situation deeply saddens me and as an advocate for these children, especially ones that are too young for any sort of IQ exam, I feel that I must comment. I understand the fact of wanting to provide for the future of your child as that is a big concern for my wife and I as I am sure it is for other parents of children with Ds. But to label a child as having MR before the age of being able to have an accurate IQ test is doing our children a disservice. Also the fact that you, by your own admission had to stretch the truth and I quote "because I want her to qualify, I have basically painted a picture of my daughter that is not accurate". You are correct in stating that the MR is defined as delayed but unfortunately, that is not the definition that will be forever attached to her name. I realize that you must do what you think you need to do and it is not my responsibility to change your mind. However, as a parent of a natural-born son who has DS and a child advocate, when a story such as this is written publicly,I feel it is my responsibility and my right to speak out for these kids. I pray that the Lord will walk with you in these difficult days. God bless you.

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  3. Thanks for your kind response to my comments, Ellen. It's not often that someone is so open and respectful to a different point of view.

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  4. I have never commented on my own comments before :)

    Jay, painting a picture that is not accurate goes much like this:
    Interviewer: Can she walk?
    Me: No
    Interviewer: Can she stand?
    Me: No (I am thinking, no, she cannot pull herself to a standing position or stand whenever she wants to, I know this is what they are asking. Yes, she can stand if we help her and support her, but I know that this is really not what they are asking. However, if I say yes, they will assume that she gets up and down anytime she wants)
    Interviewer: Can she say words?
    Me: No (I am thinking, she can sign, but that is not what they asked)
    Interviewer: Can she imitate sounds?
    Me: Some
    Interviewer: Can she put things in and out of a container?
    Me: No, but she can dump it out

    Does that give you an idea? The things that they ask are simple yes and no most of the time. And they are specific. It is hard to give an accurate picture because there are many things that they do not ask.

    I have heard from some parents that it is easier to go through this process when they are younger rather than latter, when the differences are more and more obvious.

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  5. Ellen, I don't mean to make you feel that you have to justify this to me and I sometimes have a difficult time keeping my thoughts to myself on issues which I feel passionate. I know that you feel that you are doing what is best for your family and your daughter and I respect that. Eventhough a lot of people equate MR with Ds, placing such a written label that is recorded by the State is a very permanent thing. Personally, I have seen how labels are used to limit opportunity to learn and to judge a persons mental potential based upon milestones is not an accurate picture of a persons potential. Personally, I didn't learn to walk independently until I was 3 or 3 1/2. Here I am today working as a Physical Therapist Asst. and about to finish another degree in Business Management. It is impossible to judge a person's mental capabilities based on motor problems. For our John who may be intellectually delayed, it will difficult for us to know to what extent if any until we begin communication skills. I will be praying for wisdom as you walk down this path.

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  6. As parents of children with DS, this is a tough subject. I am not a fan of MR personally and am a gentle advocate when I hear people use the word retarded in casual conversation. I also am not a fan of the labels that are put on our kids, they are sometimes tough to overcome. I hate those yes and no questions that you referred to. We have to deal with those every ECI evaluation. Ugh! I did like what your friend had to say about the power of influence. What she said about the name Jesus Christ and it's misuse is brilliant, although again I personally think it is about gentle advocacy. MR is not my favorite term and I am in support of our state effort to change the term in our school systems for evaluation purposes. We are all on this path, some of us newer than others... I am only 18 months down our path, so by no means an expert.

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  7. It's hard to speak your opinion, knowing it will be met with critisism. I applaud you for that!

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