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Wednesday, March 20, 2013

Awareness, Acceptance, Advocacy, Action

Tomorrow is World Down Syndrome Day; and just like in October - Down Syndrome Awareness Month - it is about raising awareness and acceptance for those with Down syndrome.

Where do we go after raising awareness? I have been raising awareness on my blog for 7 years now, and on FB for about 4 or 5 years. In raising awareness I feel like I'm preaching to the choir. The majority of the awareness seems to happen within the Down syndrome community.

October was first celebrated as Down Syndrome Awareness Month in 1981. That was 32 years ago. I gave birth to Kayla in 2003; so at that point there had been 22 Octobers recognized as DSAM. Yet I had never, ever, not once, heard of Oct as DSAM ... until I had Kayla.

I think with the explosion of social media people are more aware now ... we share on blogs, twitter, FB, and whatever other means ... and our friends who don't have children with Down syndrome see all this posting about DSAM and WDSD...so they are now more aware. Society is becoming somewhat more aware.

And as Down Syndrome Uprising put it in this post - "People are aware of Down syndrome ... they know it exists." I agree. People are more aware now, even though there is still a lot of misinformation and pre conceived notions about Down syndrome.

But is the acceptance there? Somewhat. No longer are parents told to place their newborns in an institution, and kids with Down syndrome are now allowed to attend public schools; something they weren't allowed to do years ago. We aren't at full acceptance yet (and unfortunately we may never be because people fear what they don't know and they fear differences) and can we say we are even headed in that direction when companies create prenatal screening tests called MaterniT21 explicitly targeting babies with Down syndrome by identifying them in the womb much earlier in pregnancies?

One way we can start with truly accepting individuals with Down syndrome is to stop reporting certain types of news stories. When those type of stories cease to be news-worthy it will feel more like acceptance. Because people with Down syndrome will just exist in society along with everyone else, and it won't be a big deal that someone with an extra chromosome was elected prom king/queen. I said this same thing almost 5 yrs ago, and yet these stories seem even more prevalent now. 

I'm trying to become a better advocate for not only my child, but for people with Down syndrome in general. I've attended workshops and hope to attend Partners in Policymaking. Change needs to happen. People with disabilities can't have more than $2000 in assets in their name or they will lose benefits. That's why it's important for things like the ABLE Act to pass legislation. Can you imagine having to micromanage your money so much so as to make sure you don't have more than $2000? How can you ever save up for anything?

As for action ... I started transferring Kayla out of her school last year and informing the school district she will attend her neighborhood school. The same school all the other kids on our street attend; she doesn't need to be bused miles away to a different school. And Kayla is visible in the community; we take her everywhere with us. She is included. She belongs.

But more action needs to come from society in general. Action of recognizing individuals with Down syndrome as just that - individuals who have the same rights and deserve the same respect as every person. They are human beings and don't need to keep being identified by having Down syndrome. They have a rightful place in society just by existing. They don't need to prove their worth or value any more than you or I do.

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Unknown said...

I think one of the biggest benefits of awareness is acceptance. When talking with Allie about WDSD we went a little into the history. She was very protective and felt that we need to make sure people with CD are not made fun of, in her 9yo mind that is the worse that can happen. Hopefully one of the outcomes of awareness is that the children take the torch and make sure that their friends that are "special" are given the same opportunities.

Nan said...

You go girl!The change, I find, happens among friends ... people who go to school together, play, together, break bread together...

Anonymous said...

I agree with everything you said!! love mom

ahoy.jenni said...

I may sound like Anne of GreenGables but I have hope for the future, I do ! I see change happening, and as you, I am a constant advocate for my kids.
Let us know what workshops you attend....

kirsten said...

Very well said and bravo on putting her in your home school! I'm a teacher and wish there were more children with Ds at my school. My daughter will be the first one in several years, if I have anything to say about it!

J said...

This post is just another reason I would cite that I love your blog. It's great how you speak about the ambivalence you feel about these " look at how wonderfully inclusive we are" news stories- I agree with you- I think society should strive to move to a place of true inclusion- so that the occurrence of someone with a disability becoming a prom queen or king is normal rather than rare enough to be newsworthy

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Jisun said...

Welp, it appears you and I have very similar feelings! I love reading your posts.