I am thinking about it a lot. Which this particular wave always is brought on by reading too many articles. Because although I have a little girl with Down syndrome, she rarely is the one who spurs my thoughts about it. Actually, she never makes me think of it when we are in the comfort of our home. Its only brought to my mind sometimes when we are with out friends, and a little bit more when we are with new people, and only because it is bound to get brought up in conversation when getting to know people, whether I avoid it or not.
I have never dealt with the cruelty face to face in person that I often read about. The cowards that anonymously send comments about how someone like me is a "horrible selfish person for knowingly giving birth to a defective person." Or the stinging jabs that Fiona is a burden to society, a waste of air, a retard. No one has EVER said this to my face. And everyone who knows us and Fiona loves her. Craves her. She is a super star at our church nursery, and my friends joke that they feel so special when Fiona chooses them to hold her.
Intentional cruelty is not often come upon in my circle. If anyone I have met feels negatively towards Fiona, Ds and my decision to continue her pregnancy, they have kept it to themselves. But daily, I do deal with the cruelty of ignorance.
From the sigh to the attempts to give me the "but at least", which all consist of stereotypes. "But at least she is happy", "But at least she is loving", "But at least she will never understand what is said about her" (REALLY?!!!) "But at least she is mild". These are really the hardest moments for me. Because if you were truly mean and evil, I could put you in your place. I could tell you how wrong you are, with research to back it. But you are sincerely being nice. You are trying to be helpful or encouraging, and trying to show me that you think my child is wonderful in your own misinformed way. But all you are doing is stereotyping my daughter. And showing me yet again, how much the world does not know about those with Down syndrome.
The most hurtful and ignorant stereotype is that people with Ds are too stupid to understand. Ya, I thought we were at least aware this is false by now. Many many people with Down syndrome attend school, graduate, and continue on to college. Some even graduate from college. A lower IQ does not equal bumbling idiot. So most things you say or do in front of someone with Down syndrome, they will pick up on. And while we are on that, very few people with Down syndrome would be considered anything but mild. Usually a person who has Down syndrome and is severely handicapped has a duel diagnosis. Meaning, that they not only have Down syndrome, but also have Autism, or CP, etc ( And not to say that those who have a duel diagnosis are any less awesome either. I have met some pretty amazing, hard working individuals who are whats considered more severely handicapped). In years past, we did not know how to tap into the mind of someone with Down syndrome. Its actually pretty simple- love them. With today's knowledge of how to help those with the extra 21st chromosome, we are seeing more and more accomplish things that were once thought impossible. Do not limit my daughters potential and intelligence by demeaning her in such an ignorant way.
And then there is the happy stereotype. This one is very touchy. Because Fiona is a very happy baby. But its the fact that you are saying that's the Down syndrome in her. That she is "such a happy person" is the truth, but to say she is "such a happy person" simply because people with Down syndrome are "happy people" is a stereotype. I want to make it very clear that people with Down syndrome are not always happy. Fiona cries, a lot. She gets frustrated and mad and yells. She hits her brothers, she snatches toys out of their hands, she pushes my hands away when she does not want something.. She is not too stupid to understand when someone has been mean to her, and she responds appropriately as I have seen her express every human emotion possible. She can be content, but also can be ornery. To every stereotype there is some truth. Yes, in general, people with Down syndrome are more often then not, happy. But to imply that they are incapable of being anything else because of their mental condition is dehumanizing.
So when you, friend or stranger, say these things to me, I bite my tongue and smile. Because the last thing I want to do is make you feel bad when you were in your heart being kind. And then I go home and struggle with whats better, silence or education. If I never tell you, you'll never know to be any different. Those stereotypes will remain in your head.
I am not a big TV watcher. I loathe "reality" tv- its garbage to me. Every once in a while I will randomly watch a drama or sitcom and get sucked into the plot for a season or two. Mostly, I like my Friends reruns. But there is one show that I love. And not so much because of the show itself, but what the show is doing.
Its breaking down stereotypes.Particularly disability- or ability stereotypes.
They portray Becky Jackson like a normal teenager, which she is. She also has Down syndrome, but they do not emphasize that. They show the different things that a teenager in a public school with Down syndrome may encounter, but yet also show how for the majority of the time her having Down syndrome doesn't make any difference. They give her character sass, and she has even gotten some criticism that she is too mean.... something that people don't often associate with someone with Down syndrome. My friend Holly dealt with this not to long ago.... her daughter Brooke was being the playground bully and another mom came up and asked Holly hesitantly if Brooke had Down syndrome. This lady was shocked how "mean" Brook was being (which FYI miss Brooke is 2 and was playing like a typical selfish 2 year old) and didn't understand how someone with Down syndrome could be so "mean". As my friend was walking away she could hear them saying "I bet she lied and she doesn't even have Down syndrome". Read Holly's Blog for the details. This stereotype was so deeply rooted in this woman's head she could not see a person with Down syndrome acting, well, like a person. ( And another FYI, Fiona bullies Brook... that's right, TWO girls with Down syndrome being mean to each other... mind blowing).
|Holly, how do I not have any pictures of Brook and Fi together? I must actually spend time with you when we hang out :)|
I am not offended if you notice that Fiona is a happy kid. What is offensive is when you assume she is a happy person because she has Down syndrome, or credit her easy-going personality not to Fiona but to Down syndrome. As one mom put it, "I hope my kid would be happy and loving regardless if they have Down syndrome or not". Breaking these stereotypes is important because they devalue someone with Down syndrome. And when it comes to a mother having to make a decision whether to continue a pregnancy or not, a stereotype can mean whether a life is lived or not.
Feels good to have that off my chest. Its been weighing pretty heavily on me lately.
Loved this article on Glee.