Understanding a Down Syndrome Diagnosis is an absolutely excellent booklet for pregnant women (and their partners) who've learned that the fetus they're carrying has Down syndrome. It's excellent for a number of reasons:
- It has pictures that are not just beautiful--they're humanizing. This is a big deal. Many, many publications about Down syndrome show the person with Down syndrome as a kind of freak show character, like, "Look at these terrible defects! Weird eyes! Space between the first and second toe! A line on the hand! OMG!" Understanding a Down Syndrome Diagnosis shows kids and teens with Down syndrome doing the things they do in their lives: coloring with a friend, waiting for their turn in dance class, working at the hospital, riding bikes. I love the pictures in this booklet.
- The information they provide about Down syndrome isn't frightening. It's balanced--accurate, and they don't lead with the typical list of "Here are all the possible things that could go wrong." We all know that if we're pregnant and are told all the possible things that could go wrong in the life of the fetus, we will be truly frightened. Lots of things could go wrong with any of us. That's not what defines us, though.
- For instance, the first page of the booklet says, "The range of medical conditions and abilities can range widely for people with Down syndrome. Therefore, each person with Down syndrome has his or her own strengths and weaknesses that no one can predict before birth."
- The booklet acknowledges that abortion is an option. Many booklets provided by organizations focused on Down syndrome refuse to acknowledge abortion--and by refusing to acknowledge it, they alienate many of their readers, as well as alienating the medical providers whose help they need to share the booklet. Plus, let's all recognize that women have control over their own reproductive decision-making. Abortion is the right decision for some women. Period.
- The book provides recent research and excellent information (in English and Spanish) about how much the meaning of Down syndrome has changed in recent years. For instance, "It is becoming more and more common to see adults with Down syndrome attending college, living independently, getting married, and working in the community as professionals such as teaching and medical assistants, artists, and musicians." Hell, yeah.
I love this booklet. I love Stephanie Meredith, who is the heart and soul of this project (and who will appear in my book). I want each of you to support Lettercase, which produces this booklet and distributes it--for free--to people who've just learned that their fetus has Down syndrome.
So here's the point of this blog post:
|(Not a picture from Understanding a Down Syndrome Diagnosis.)|
Advances in prenatal testing over the past year mean that more and more pregnant women are learning that their fetus has Down syndrome. And yet most OB/GYNs--who are the ones telling expectant parents what's up--receive little to no training about Down syndrome, and the majority of pregnant women say they don't receive the information they need to understand what Down syndrome is.
You all know how important it is to me that we recognize Down syndrome as a valuable kind of human diversity--not a "defect" or "disease." This booklet does that. It provides the kind of information that can help cut through the stereotypes that define many people's understanding of Down syndrome and other intellectual disabilities. It would have made a difference to me if I'd had this booklet when we first learned that the fetus might have Down syndrome. In fact, it would have made a difference to me after Maybelle was born! I love looking at it now--I'm having a great time flipping through it as I'm writing this blog post. I should send it to my parents.
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