October is Down Syndrome Awareness Month. We've had a lot of people say to us, "Awareness Month? It's 2014! We don't need awareness month! What we need is Down syndrome inclusion month! Or acceptance month! Or advocacy month!"
“From the new mom who has just gotten a diagnosis...well, she "knows" what Down syndrome is...but really, she has no idea what it means or what to expect.
Or the grandfather who calls and says his daughter is expecting a baby with Down syndrome, and that "this is the worst thing that has ever happened to our family".
Or the educator who tells the parents of a seven year old, "Those expectations for your child are unrealistic. Don't you understand that he has Down syndrome?"
Or the doctor who counsels his patients to end a pregnancy to avoid the "suffering and heartache".
Yes, all those things still happen in 2014 America.”
Fear is still being used to manipulate parents. The same reasoning that used to be employed to convince parents to leave their children in institutions is now being used in conversations around guardianship.
In other rooms of the Down syndrome community, a certain level of bullying is being used to convince parents that anything other than their definition of “full community participation” is failure and bad parenting.
It’s no surprise that different opinions will exist about what approach we should take in October and on World Down Syndrome Day in March.
One of my own pet peeves involves the countless stories of Homecoming and Prom kings and queens that surface in the media every year. Some are well written; some are not. Some leave me with an overwhelming sense that the piece is more about how wonderful the other students are for voting for someone who has Down syndrome. Those upset me. But a recent comment on Facebook tells the other side:
“Behind all these stories of our kids winning contests are parents who had to buck the system and fight to have their child included in the school.”
Can We Re-Define Awareness?
What about awareness that discrimination still exists? Take for example, the opinions expressed recently about #JusticeForEthan ? Too many people out there still believe that our adult children should be kept at home. Some of these people are in positions of power and influence. These opinions are still front and center in stories about life and death situations.
We also need stories that show the hard work and determination that is out there in our community. Stories like the one about Adam Zimdar, a 35 year old man from Michigan who has a job, lives on his own, is a champion bowler, and is training for a long distance run.
Or Minnesota resident Mikayla Holmgren who expresses herself through dance.
- I believe that there should be more “cute photos” – but that more of those photos should feature adults who have Down syndrome.
- I think that just being out there in the community can lead to a greater awareness and acceptance of our loved ones.
- I’m dedicated to idea that different perspectives exist for a reason and no one view is right or wrong, so awareness, advocacy, acceptance, and inclusion can be different words for similar efforts.
- I know that there is more important work to be done. I don’t have all the answers or a crystal ball to tell me when or if full acceptance will ever happen. I just don’t feel that we’re there yet, so let’s work together, instead of creating more drama and divisiveness among our own community.
Everyone can take their own path as long as we continue to “share the road.”
What are your favorite ways to celebrate Awareness month? Have you seen campaigns or events that you like this year?