Friday, March 15, 2013

Mongoloid: What My Daughter Is and Is Not

We received Vada's Down syndrome diagnosis somewhere around the halfway point of my pregnancy. I was already on bed rest and remained there throughout the final weeks of my pregnancy. Being on bed rest was a blessing of sorts, for me personally, because it gave me time to fully come to terms and accept Gods plan, whatever that was because even though I was accepting it, I was still very confused as to what it was and why it was happening to me and my family.

Somewhere during my pregnancy and along my studies on Down syndrome I read about Dr. John Langdon Down and how he was the first to observe the commonalities between individuals with Down syndrome. One of the first things that I read was a paper from Dr. Down where he wrote and refereed to individuals with Down syndrome as patients afflicted with Mongoloid idiocy. When I read this, I immediately thought that he was the idiot and stopped reading about him altogether. I was angered by his words and what I thought to be cruelty on his part. It disgusted me that a medical professional could speak and write this way about another human being. Keep in mind, I was pregnant, hormonal and I recently had found out that my child had this same diagnosis that a doctor was calling these horrid names.

 It took a very long time for me to go back and read more on him and an even longer time to understand that the Dr. Down was from the 1800's, which was a very different time than what we are living in now. Because I did go back and read more on the Doctor I discovered that he called individuals with Down syndrome "Mongoloids" because he thought that they resembled people of the Mongolian descent. As far as calling individuals with Ds idiots, well, I can only gather that it is because  up until the last thirty to forty years we have really only begun to invest in educating individuals with Down syndrome. Before this time, these individuals might have been labeled "trainable" and prior to that they were institutionalized because most people didn't put much faith into their personal abilities.

I've further read that Dr. Langdon Down was a strong advocate for women's educational rights as well as against slavery in a time when these things were frowned upon, which is besides the point but leads me to believe that maybe he wasn't the bad guy I had first thought he was.

Since reading about Dr. Langdon Down's work with people who have Down syndrome I have heard or read the "mongoloid" reference as many times as I can count on one hand but it is such an old word, such an ugly name, that I never would have guessed that I would have heard it in reference towards my daughter... but I did and just days ago.

 I have taken some time to think over the day in its entirety. I needed to pray about it and discuss it with my husband. I wanted to get some questions answered and after thinking it through and praying even more, Ive decided that it was important to share my experience because even though we are living in a better time than even thirty years ago, there is still a lot of confusion. (And parents of children with Down syndrome, feel free to throw in anything that you feel that I have left out or that I may have misrepresented in anyway.)

In our women's group at church we were reading a book called Calm My Anxious Heart, by Linda Dillow. This week we discussed our most recently read chapter, Faith: The Foundation. In this chapter there was a specific paragraph that really stuck out to me while I was reading it and then again during our meeting;
There are no accidents, no mistakes, no miscalculations. All is under His sovereign control, and nothing is permitted but what He has decreed. 

I personally believe this whole heartily, I believe that Vada having Down syndrome was intentional. I know that science says differently. Science tells us that Down syndrome is a mutation, a mistake but when I look at my little girl I see anything but that! To me, she is an angel and I believe that our family is blessed to be the one's who were chosen to raise and love her!

Sadly, people from the outside looking in, don't always see that way, in fact I have come to realize that in most cases many people believe that we are not blessed and that she or rather her having Down syndrome was in fact a mistake. How sad is that?

Another major discovery that has occurred to me lately is that even those who are fairly close to our circle think of Vada's condition as a disease and that's just not the case. Down syndrome is not like Cancer or Aids. People who have Down syndrome are not specifically suffering from the Down syndrome, they are not dying from the Down syndrome and your not going to catch it! Yes, people who have Down syndrome do have a higher risk for developing certain other medical conditions or diseases such as Alzheimer, Cancer, Thyroid disease and many other medical issues but it is not the Down syndrome that they suffer from. Seriously, they suffer more from people's stupidity or ignorance's. Sorry, but that's how I see it.

So, during my Bible study group I got into a very respectable conversation explaining that I in fact do believe that Vada's diagnosis was an intentional act on God's part, (which by the way was a internally, emotionally, draining conversation.

 Afterward, I stayed back with some of the younger mom's who have children Vada's age, we all have lunch together in the church. There was another women's meeting going on but closing up where we usually have lunch and so I was just standing around following Miss V and wherever her little legs decided to take her when an older lady from the second women's meeting came up to me while looking at Vada and said something along the lines of it being really nice what the Mongoloids can now do today and how when she was little, she had a Mongoloid in her neighborhood who couldn't do anything.

  Talk about emotional!

My smile froze on my face, I could feel it pasted there! I think I said "Oh, yeh?" and that was it.  To say that I was in shock is an understatement. I was angry yes, but mostly I was just hurt. I looked at my sweet girl who was exploring her surroundings, completely unknowing of what was just said and I knew that I couldn't just let this one go, even if it was someone from our church.

Once the other mothers from my women's group started to come in I asked one to watch Vada and I slipped away to talk with this women who had made the mongoloid reference. Shaking and with tears already building in my eyes I repeated to her what she had just said and I told  her that she just couldn't talk like that. I asked her to please never refer to my daughter or anyone else with Down syndrome as a mongoloid again. I told her how offensive and hurtful it was but that I understood that this was a term that she grew up with but that it is not a correct term to use any longer. Then I took advantage to also tell her that calling my daughter a Down's syndrome child/girl is also inappropriate and offensive. (She's not a Down syndrome child, she is a child who has Down syndrome.) I was so nervous, mainly because I didn't want to hurt her feelings or offend her. I never want to hear my daughter called that again and if I can help prevent it from happening, then its my job to so!

I feel blessed to live in a time that has evolved compared to fifty or even thirty years ago but I am still hoping to see a great deal of changes in my time here on Earth. 

As a parent of a child with Down syndrome, I want to make things easier for those who don't have a child with a bonus chromosome (those who are looking in from the outside), to understand what Down syndrome really is.

If you don't "get" the things that I wrote above, then all things that I really want for you to understand are below...

What My Daughter Is Not:

My daughter is not a Mongoloid.
My daughter is not a retard.
My daughter is not Down syndrome.
My daughter is not a disease.
My daughter is not a special needs child.
My daughter is not a Down's girl.
My daughter is not a Down's syndrome child.
My daughter is not a mistake.

What My Daughter Is:

My daughter is a little girl, my little girl, my daughter.
My daughter is a sister.
My daughter is a grand daughter.
My daughter is a cousin.
My daughter is a friend.
My daughter is a student.
My daughter is a blessing.
My daughter is a miracle.
My daughter is smart.
My daughter is teachable.
My daughter is valuable.
My daughter is worthy.
My daughter is lovable and loving.
My daughter is a human.
My daughter is a child who has special needs.

My daughter has Down syndrome and she is beautiful in every single way.
My daughter was made in God's image.


We Can Do All Things said...

Love it, Your poem is beautiful. I too understand your pain with the word mongloid, this is what Adeline's doctor told she is was when she visited us in the hospital.

Anonymous said...

Well said Tara! There is an older woman that lives down the street from us and these same words were used in our conversation last summer. She even has a relative that has Ds. She is in her 80's and I understand it was a term used when she was growing up! I didn't have the courage to address her though! Good job on your part and way to advocate for our children!!!

Anna Theurer said...

This post has left me shaking and crying. In the beginning, I was chuckling a bit at your anger over Langdon Down. It is wonderful how us mama bears are ready to fight at any given moment--even if it is someone in the 1800s. Well, funny is not the correct word, more like awesome. Then I continued on. Yes, my daughter has been called a mongoloid before and also by an "old lady"--a lady who assumed that this term was still appropriate because it was used during "her day". Yet, I tell you right now that she KNOWS "nigger" is not longer appropriate even though it was used in "her day". People truly are ignorant until someone takes the time to educate them. What you did was courageous and handled beautifully. You approached her with tears in your eyes and shaking from the shock of it. You handled it superbly. I only wish I did the same when Ellie was referred to that way--she was actually trying to pay her a compliment about something but all i can remember is the mongoloid (I think my mouth just hanged open). The tears, your tears, are probably what made the difference. She knows that you were offended, that your daughter Vada was insulted. I am proud and I am encouraged to be the advocate that you are. Now. . . what did the lady say? What was her big response?

Finally, I love your poem. It is powerful and beautiful. My favorite post of yours.

Catherine Collins said...

What a great post!! I hate how this world labels people. I was a nurse at an ENT office before I became a SAHM and there were many kids that came in that had Ds. They were some of my favorite patients such a blessing and special kids. You are an amazing mom to go say something to that lady. Love the poem. :-)

Isreyl Hornsby said...

It's incredible how thoughtless and rude people can be.I actually had a woman ask me what was wrong with my son who is hard of hearing and wears hearing aids. I told her nothing was wrong with him, that he is an AMAZING child and I am blessed to be his mother. It's really great to know there are other parents out there that love their children and see them for the blessings they are. Thanks for sharing.