Tuesday, June 9, 2015

The Media and Down syndrome

I wrote this piece on Baby Center to explain some of the sorts of media pregnant moms can expect to encounter as they go through their journey with their child with Down syndrome. It may be something I want to point to again, so I thought I would use my neglected blog to store it and share it.

The media loves stories about people with Down syndrome, for whatever reason. I have a news feed on the subject that I have received every day for the last almost 8 years.

My observation is that the stories fall into a few broad categories. This is not meant to be an exhaustive list - just the biggies. Here is a snapshot of the type of stories you may see:

1. Stories that claim to be about people or children with Down syndrome but are really about their parents struggles with diagnosis. Those follow exactly the same arc every time - these parents had a baby with Down syndrome. They were sad. Their baby was awesome. Now the parents are doing X, Y or Z to make the world a better place for their baby with Down syndrome. The variation is that the baby is doing XY or Z (modeling, using a new therapy or program that is being brought into the community.) The news likes the sensational part of the sadness we have and that the extra chromosome makes us sad at first.

2. Homecoming prom king/queen. There are seasons for these stories. The best ones tell about the life and accomplishments and friendships the person with Down syndrome has had and show that person as a human. The worst have an "awe, shucks, those kind typical kids took pity on the poor person with Down syndrome." (My personal theory is that the votes for kids with Ds many times aren't as much for that person as they are against the injustices of the social class system in all many high schools. ) You can tell from the interviews the schools where the person with Ds is really known and loved by his or her classmates vs. the ones where they are doing it because they saw other schools do it and high schoolers are lemmings. The news loves the unexpected drama of this voting, but I suspect since we are seeing so many of these stories so many places eventually it won't be news.

3. The "those kind typical kids were good sports and let the kid with Down syndrome catch a football/make a basket/be the top of the pyramid for one game." Lots of people hate those, but I read it from the perspective of a parent of an older child with Down syndrome, and adjusted my attitude a bit about the act of doing it, but I don't always love the way they are reported by the news- (Lespring's response on this thread is the one that changed my thinking on it -http://www.downsyn.com/phpbb2/viewtopic.php?t=42120&highlight=football)

4. Stories that involve the law. These may be person wandered off, person was abused by someone, person got mistreated by law enforcement. Thank goodness, these stories are by far the minority, but they do happen. At first they terrified me (every story about Down syndrome I tended to personalize at first, but then I looked at the 20 other stories on the same page and realized there were bad things happening to typical women all the time and I never had a personal, irrational fear that those things would happen to my other daughters.)

5. Adults. I tend to love reading stories about adults with Down syndrome, what they do, and how and why they've been able to do it. Mostly they make me excited about Violette's future. I read a lot, and always have. I've become much more aware of many issues that I wasn't when I first had Violette - especially how some people with disabilities feel about some types of stories and presentations (google "inspiration porn"). On the other hand, I know several people with Down syndrome are happy to have Down syndrome and happy to share what they accomplish and what they can do with the world (just like many other people do.) It would be hard to be Madeline Stuart, or the people who love her and to see criticisms of the way her story is being told or the choice of her photographs being shown. Taking Down syndrome out of the equation with this story, I can't see how it would be told much differently than it has with other models (unless I've missed some more exploitative stories about her - I tend to read the first news outlet's story and skip the rest of them.) I do know, that if you are already critical of certain types of stories, you'll probably find examples of the same types of things with a Down syndrome focus. (I love weight loss stories, personally, and find inspiration in about everyone who loses weight through exercise and food choices if they have Down syndrome or not.)

6. Medical stuff. Lots going on in this area from prenatal tests to cognition therapies to studies on everything.

7. Fundraisers of the "gofund" me variety. They seem to be newsworthy, for whatever reason. I don't just love them and I'm HIGHLY skeptical of many of them. Some are legit, but some are just scammers. We've seen seemly good stories go awry when it comes to fundraising sites and Down syndrome. When it doubt research and ask questions. And remember, just because someone is asking for heaps of $ as it relates to Down syndrome, it doesn't mean that you'll be strapped because you have a child with Ds. The media seems to like that stuff, though.

I think Down syndrome, and disability in general, have a love/hate relationship with the media. I know I do when I read stories - some are tremendous and do wonderful things to change perceptions and open eyes. Through the years media has been wonderful when you think about passage of landmark bills that changed the lived of people with disabilities - ADA, and IDEA and even the ABLE Act, while at the same time there is coverage that reinforces stereotypes or exploits or subtly (and occasionally overtly) is prejudice.

In the end, we all take away unique things from what we see and read based on our own experiences and ideas. To me, reading everything about Down syndrome - good/bad/medical has been eye opening to me. There are stories I find tiresome for sure. Media exists to get people to read it - stories about average people with or without Down syndrome aren't newsworthy, so we get a very skewed look at the world when we look at it. We encourage people to find local support as soon as they are ready for a reason - the chance to meet with real families is invaluable. The most negative stories, the most optimistic stories? Neither are likely to be what your experience will be. You will, like many of us, adapt and grow as people and parents to whoever and whatever your child is exactly as they are.