Mentally Retarded....the term is changing?

Everyone who knows me is aware that I do not like the word, "retard". I especially don't like to hear someone call another person a "retard". I can't stand it when people say, "That is so retarded!". It is rare that I will say anything when an adult swears or uses a hurtful term. I am as guilty as anyone when it comes to having a potty mouth. I see some value in swearing and expressing myself verbally. But this word is one I do not use. This word has been known to make me speak out immediately.

Where does my dislike for the word retarded come from?

My sister had a stroke when she was six years old. Her special needs meant that I grew up around other children with special needs and some were diagnosed as mentally retarded. I remember learning the word "retarded". My sister is not diagnosed as mentally retarded but I do have painful memories of hearing other kids at school saying cruel things like, "Your sister is so retarded and so are you!" And at the same time I remember overhearing conversations about certain children being diagnosed as "mentally retarded".

As a child this confused me. I knew right away that my sister having special needs affected how my sister and me were perceived by others. When I heard children and even adults calling other people retarded in a cruel way I was taken aback. How could someone have a diagnosis of mental retardation and at the same time people were calling people with and without disabilities "retarded"? It was easy to put two and two together and realize that the diagnosis of mentally retarded was being misused. I hated the sound of the word as well. Most of all I hated the pain that word caused others.Today I found out that Maizie's MR Waiver (Mental Retardation Waiver) has been changed to the ID Waiver (Intellectual Disability Waiver). I have not seen this change on any paper work and most case workers and medical professionals use the term MR Waiver.

Even after hating the word "retarded" for years I was surprised to find myself not liking the new term either. It is a big improvement but I still don't like it. Possibly, I will never be pleased with the language surrounding special needs. What would I call it if it was up to me? I have no idea. I do know however that the terms never seem to fit my daughter or anyone I know that is diagnosed as such. And yet, the diagnosis or label is necessary to acquire services.

In this house the word "retarded" is frowned upon. It has been banned. I have walked in on one of the girls looking right at Maizie and saying, "You are so retarded!" I about fell to the floor. Did she have any idea what she was saying? Did she know that she was calling a child with a diagnosis of mental retardation "retarded'? No. She did not.

Maizie has begun to put the terms together as she hears me discussing services on the phone or reads papers I am working on. I watch as she processes how the terms are being thrown around and I can see a look of concern.

I explained to Chris and the girls why I don't appreciate the term being used in this house. And yet, I still hear it every now and then. I have even said "retarded" in bad way on occasion! I was beyond shocked when I did. It is a hurtful word that has permeated our culture despite also being a required diagnosis for many services. Confusing for sure.

Comedies seem to be all about throwing the term in whenever possible. You all know the controversy surrounding "Tropic Thunder". I saw the movie and I loved it despite its use of the word. I know. I'm not necessarily proud of that fact but I love all the Coen Brothers movies.

What is it about this term that is so pervasive in our culture? Other negative terms come and go but this one seems to be stuck.

Thoughts on Labeling

When Maizie was a baby and we knew she was not feeling well I remember thinking, "If we just knew what it was. A name. If we had the name of it everything will fall into place. There will be answers. There will be things we can do, things to change, ways to make everything better."

Once we had a "label" I always felt hopeful. I knew that information was power and with it I felt powerful. Over time the first label was not fitting, and then the second, the third, the fourth, etc.

With each label I read books, I studied, I taught others, I interviewed doctors and professionals, I looked for the best help we could find.

Each time...nothing changed. What was I expecting to change? Did I want Maizie to be "normal"? Sure we had medications to try, therapies and behavioral strategies. What exactly was it we were looking for? We were searching for answers to help Maizie feel better. That much I knew for sure. I wanted her to be able to play, to speak, to answer questions, to laugh and run and play. Making it through a day without being in pain was certainly something I wanted for her. I wanted her to have a childhood like I had.

Whatever label we had did grant us a certain power of sorts. It led us to a certain doctor who would in turn give us ideas or medications to help Maizie. Some of the medications helped and some did not. At times there were the doctors who knew nothing, who caused more trauma and damage than I could have foreseen.

All of this I never wanted to put Maizie through. I never wanted to put Joe and me through it. But, it was that way. I can't see it going any differently. The searching, the sleepless nights, watching Maizie in pain physically and emotionally for hours...for days. How can a parent watch that and not search? It is impossible.

And yet. When it gets right down to it...Maizie is just Maizie. She can not be categorized. One can not say, "See! She is just like this child here or that one there. Do what we did for this child and it will help her exactly the same!" Like everyone else in this world Maizie is her own person despite her diagnosis. What works for one child or adult may not work for another.

Maizie's medications don't change who she is. They are not some miracle potion that make her find her words, stop her anxiety, insomnia, migraines and inability to withstand certain noises or situations go away. Her medications are a tool. A tool that must be researched, reexamined and thoroughly evaluated on an ongoing basis.

Maizie is not her medication. She is simply Maizie. A child who is simply that. A child.

I continue to question the labels we use. She needed a label in order to get schooling where she is taught using alternative methods. Labels that determine the correct medications to treat her pain are very important. A label was necessary for her to get proper care in the hospital when the nurses insisted she could withstand having a roommate when it was beyond clear that she could not. I could go on and on. Our lives revolve around these labels. I have fought for these labels and I fight for others to see beyond them.

We rely on labels to move forward. And yet every day I am with Maizie it becomes more clear to me that yes, we rely on these words, these categorizations for help...but she is not at all what they define. Maizie is Maizie. My daughter. A child.

We are a world full of people wanting to put everyone else in a category, a slot, a box. People say, "Oh, if we can just get this one part of this child under control....if we can just figure out what makes this one tick like that when I want so badly for her to tick like this...why can't she be more like this or like that? Maybe if we call it that or this we can make it stop. Maybe we can change her to be more like that child or more like me?"

A label...is a label....is a label. My child has a whole list of her intended labels floating around on charts, graphs, medication bottles and IEP's.

The world wants to squeeze her into a box. Make her fit in. Push her this way and that. I just want her to be a kid. And yet, there they are...the labels. Our society is obsessed with them. I certainly have been as well.Maizie is big into the classification of flowers. She carries a book with her wherever we go. If we cannot find a particular weed or flower in the book she makes me search endlessly for it online. She says, "Keep looking mom. Don't give up. I know you can find it. This flower has to match something."

I took these photos as Maizie was diligently trying to classify a dead Black-Eyed Susan she had picked for me. You can see it all wilted in the background. Once she found it she said, "Yes! It fits in right here. See....this flower is just like that one. It has a match. Did you know that mom?"

Immediately when she said that I was struck with how a flower can be categorized, drawn and labeled. It has a place where it fits, where it grows and it needs a certain amount of water and sun. The list seems so easy. The labels so fitting.

This is not so for my Maizie. Her labels don't define her. They say little about who she is. Bits and pieces may seem fitting.

Finally, I don't seek out labels anymore and I accept that current labels say very little about who she is.

New labels change nothing.
Josephine Lawrence, Let Us Consider One Another (1945)