My best friend worked at a day camp a few years ago. Thinking back, I remember her telling me about a couple of her favorite kids. After Cora was born she talked more about them. About their wacky, silly sense of humor, their enthusiasm and how much about them stuck with her over the years.
Oh yeah. They had Down syndrome.
She told me that she had a conversation with one of the boys when he told her how it was hard to be judged by the way you look.
I know that is a concern that many parents like me share. That our children will be judged by the differences written on their faces before they have made an impression as individuals.
I'm sure it will happen a lot. And as much as I hate thinking about it, the thought of Cora feeling that way about herself breaks my heart a little.
One could argue that having a disability (for lack of a better word) that is recognized by physical characteristics alone could have some benefits. Perhaps people will have more patience or understanding upon recognizing her difference. Maybe they will postpone judging.
But some will definitely judge faster based on what they see. Because the familiar characteristics of Down syndrome are definitely visible; like a brand, in a way. With that brand comes a lot of expectations, most of them low.
What you can't see in someone's facial features, though, are their talents, their gifts or the way they can shatter expectations. Expectations are rising all the time and people with DS are rising to meet them wherever you look.
From where I stand now, which is admittedly pretty early on in my intimate consideration of disability, the best way to gradually start to diminish the judgments has to be exposure. It starts in our communities, in our baby groups, and story times and baby signing classes. And it's critical in our schools.
As incredible as we know inclusion is for our children with disabilities, it's also so important for all the other children. Important for those small children to sit side-by-side with their peers with Down syndrome and autism and other differently-abled individuals. Important for them to have the opportunities to know people like Cora and to start to remove that insipid fear of the unknown.
I wish I would have had the chance to grow up in a community and in schools like that. I wish that it didn't take Cora's birth to make me realize that awareness, acceptance and support is so critical to all of us. But I am here now. And now I can do my little part to make sure that Cora is seen, that she is heard, that she is a part of her community.
I can't remove judgment from people's minds and hearts. I can't erase the fact that her diagnosis is written on her face. But I can continue to advocate for her, to give her the best opportunities I can and to help ensure that she is included; for the good of her and for the good of our society.
I love this post and the picture of Cora (and that super-duper trike with a cup holder!). I see these 31-for-21 posts as another way to increase "exposure". I hope we're not all just talking to each other, though. (Hey that might be a good topic for another blog post!)ReplyDelete
That smile gets me every time... I am always looking forward to your blogs. I need to get some more photos of her! Hopefully we can get down there in the next couple of months. :)ReplyDelete
I wish there had been inclusion in schools when I was growing up, too. I know I would have been truly touched by the experience, and know that at least now our kids can do that for others. And while they may be more quickly judged because of their appearances, I have heard from parents of children with mosaic Down syndrome or autism that it's really, really hard on them, too, because people aren't *expecting* the disability and don't come prepared with that patience, etc., that they just don't understand *why* these children/people aren't acting/speaking/behaving the way they'd expect them to. I think having the physical difference actually helps.ReplyDelete
Fiona has mosaic down syndrome, and although I see the physical features of ds in her face most don't. Like becca said, I fear people being less patient with her and not understanding. I already get the looks and questions about whats wrong with her because she is so small, barely walking and not talking at age 2. I fear more people calling her the r word jokingly, not realising that she really does have a mental handicap. But at the same time, I fear people seeing the ds features and pre judging her, limiting her or not including her based solely on their assumptions. Having a child with special needs and dealing with how.people accept them is hard period.ReplyDelete
Educating and enlightening is key
Great post Leah! My Nephew that I am raising has Aspergers, it is not noticeable that he has a disability...And his peers and others treat him harshly because of this. He behaves well below his age and people just don't understand why because they don't see anything "wrong" with him. It is very difficult for him in high school this year being accepted by anyone, it breaks my heart. In many ways I feel Russell's path will be easier because he does have a recognizable disability.ReplyDelete
It's amazing how much your perspective can change. Kamdyn has changed my thinking on so many things. I wish it hadn't taken having her, but it did. Now we can help other people see, just like you're doing.ReplyDelete
Loved this post. Thanks!ReplyDelete
When we saw Sara Wolff speak a couple weeks ago, I had the same wish. I wished I would have known more people with Ds syndrome and other disabilities. Sara would be a wonderful friend! And a friendship her wouldn't be lopsided because she had Ds. It would be a full and equal friendship!. I recently learned that our bank teller has a son with Ds our age. He's lived in our community our whole life but I know he didn't go to our school.ReplyDelete
Where I went to school, in elementary school, there was a wing for 'special education.' Although it was somewhat segregated, all students were assigned time to go and hang out and play and help the kids with disabilities. Among these students were kids with DS, autism and other cognitive and physical disabilities. As a result, I think my personal acceptance is much higher and my appreciation greater. Also, my tolerance of others, in general, is better (well, except for dummy-head drivers ;-) P BeanReplyDelete
Great post. I have often had similar thoughts - a blessing that people can see the features of Down syndrome and perhaps be more understanding, but also means that our kids can be judged before anyone gets to know how amazing they are on the inside. Thank you for articulating it so beautifully. I have shared this on my blog's Facebook page today as my 31-for-21 links (I'm not as dedicated as you posting 31 of your own blog posts!!) xReplyDelete