Why We Still Need “Awareness” Campaigns
October 3, 2014
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Now Reading: Why We Still Need “Awareness” Campaigns
October 3, 2014
Every April is Autism Awareness Month. We all know that.
And every April the autism community gets overwhelmed with articles about autism. And by about April 12th the autism community is usually screaming “enough with the awareness! everybody should be aware by now”
But I don’t agree with that. I don’t agree that everybody is aware.
And I explained why in my excellent Autism Awareness Day post from 2013 🙂 when I wrote:
For the people that say the outside world should be “aware” by now. You’re wrong. You’re living in your autism bubble.
To you and to me, it seems that autism is in the news EVERY FREAKING DAY. But that’s because we are seeking out that news.
Admit it, you have a google news alert set to feed you all the autism news of the day.
Or most of your friends on FB are also in the autism trenches so you’re FB newsfeed is filled with autism stories EVERY day.
Admit it you are obsessed with reading blogs written by autism moms & especially dads. 🙂
So, to you, it seems like the world is drowning in autism awareness. But it’s not true. You’re only reading about autism if you want to read about autism.
If you’re a typical parent, and you watch the evening news every night, check out CNN.com a few times a week, and read your local newspaper every day you’re probably not that aware of autism.
Think about the types of & the frequency of autism stories that hit those sources on a weekly basis.
They are few and far between.
And seeing maybe 5-6 stories like this a month doesn’t make you “autism aware” in my mind.
And I repost all that today (a) because it is awesome writing 🙂 and (b) because today I came face to face with the lack of awareness I was just writing about.
A lack of awareness, not about autism, but about Spina Bifida.
I stumbled across this article “Maybe I Caused My Son’s Birth Defect, Maybe I Didn’t. Here’s Why It Doesn’t Matter.”
Catchy title. So I click on it and I read:
October is Spina Bifida Awareness Month, meaning that everyone and their mom is up in arms about prevention. If you follow any spina bifida-affiliated organizations, then you’re totally going to get an earful this month about folic acid and how SB is totes preventable if you just take folic acid for the love of Christ.
And I’m reading this blog and it feels like I’m reading an autism mom blog, but everything is a bit different and I’m not aware of anything.
“October is Spina Bifida Awareness Month… (I didn’t know that)
…meaning that everyone and their mom is up in arms about prevention… (not in my autism bubble, not in the typical parent bubble)
If you follow any spina bifida-affiliated organizations… (I do not)
….then you’re totally going to get an earful this month about folic acid and how SB is totes preventable if you just take folic acid for the love of Christ. (I didn’t know that Spina Bifida could be preventable with folic acid, heck I don’t even know what Spina Bifida is)
So I’m thinking SB must be rare, that’s why I never heard of it. So I google it and I find their main organization / charity, the Spina Bifida Association and on that site is says
What is Spina Bifida?Spina Bifida is the most common permanently disabling birth defect in the United States.
Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.
What causes Spina Bifida?No one knows for sure. Scientists believe that genetic and environmental factors act together to cause the condition.
Ok, so it’s not that rare. It’s not as common as autism. It’s not 1 in 68, but it’s not as rare as I thought it would be… but I knew nothing about it. October is Spina Bifida Awareness Month and not one story showed up in my Facebook News Feed about it. I haven’t seen one story on the news about it.
But I finished reading that blog post and that mom referenced another blog post and I read that and then found another one.
And I slowly found that there was a whole community of Spina Bifida parent bloggers out there, ok maybe not as many as the autism parent bloggers, but there was quite a few out there. And from the few that I read, these Spina Bifida parents were burnt out on all the Spina Bifida Awareness! And we’re only 3 days into SB month! LOL
It truly felt like I was reading autism blogs in April.
And what’s probably harder for these SB parents is that while there seems to be a ton of different possible causes for autism and a ton of different things for autism parents to feel guilty about…with SB it seems pretty certain that there’s one thing that can help prevent SB, and therefore one thing for SB moms to feel guilty about… Folic acid supplements from before the mom even knows she is pregnant.
The 2nd blog I read today was called “I wish the SBA would shut up about folic acid” and just like autism parents its seems like SB parents are frustrated during their awareness month to read about all the things they might’ve done wrong during their pregnancy. As this blogger wrote:
When I see the SBA constantly talking about preventing SB (with folic acid), it actually feels hurtful. It feels like they are telling moms like me it’s our fault if our kids have SB, and it feels like they are telling their primary audience, people who already HAVE SB, that things would be better if they weren’t the way they have been for their entire lives. People with SB and the people who love them don’t need to be constantly reminded about folic acid. Folic acid isn’t going to help us, and preventing SB isn’t something we need– SB is here, in our lives, and it’s not going anywhere.
I don’t know where I’m going with this post really. It’s just that this whole thing felt so eerily similar to autism awareness in April. SB parents not liking the way the disability is being portrayed by their main organization and feeling so burnt out by all the SB Awareness coverage during their awareness month.
Meanwhile, the general public, the people who need to be aware aren’t burnt out at all. As I said, I haven’t seen one news story about this. I had no idea that 70% of SB cases can possibly be prevented by the potential mother consuming folic acid. Heck I didn’t even know what SB was.
Now, ok, most people kinda know what autism is, but it really is in the same boat.
And I wonder how many disabilities are out there with a strong, tight bond of parents battling in the trenches who are so tired of their awareness months, but meanwhile they are the only ones seeing the awareness stories. How do we change that? How do we flip that? Maybe the SBA should promote Autism Awareness month and Autism Speaks should promote Spina Bifida Awareness Month? I don’t know…I’m sorta kidding, but at least that way we’d each learn about the other’s issues, and the burnout rate wouldn’t be so high…
I got no answers… it just saddens me that the SB parents are so burnt out on all the awareness coverage and meanwhile no one else knows about it… and I think that is somewhat true of autism awareness month for us Autism Parents.
So, as much as we hate reading about all the awareness… I still think it is vitally needed and we need to somehow figure out a way to pass these awareness stories out to the wider world and not just share them amongst our little community.
I’m going to end this post with another quote from my awesome Autism Awareness Day post from 2013. And I truly feel that in the quote below the word “autism” can be replaced by “spina bifida” or any other disorder that has an awareness day or month.
Autism Awareness Day & Month is really not for us. It’s not for us living in the autism trenches.
The Day & Month are for the rest of the world…to help them be more “aware”.
Having autism awareness day & month just forces the mainstream media to throw a few more autism stories on the air.
Again, I know, I know, you’re thinking, “It’s freaking 1 in freaking 68! How can they not be aware by now!”
Trust me, they are not.
And if I wasn’t an autism parent, I would not be aware. I would not be setting a google news alert to feed me all autism news stories. I wouldn’t be reading autism parent blogs.
If I was a typical parent, I’d be digesting the autism news that I happen to stumble across while I’m looking for the sports section of the paper.
But for one month a year, and especially on one day a year, we can try to force some awareness down the typical world’s throats. So they SLOWLY become more & more “aware” of the impending epidemic of autistic kids growing up and leaving the school system, and having nothing to do and nowhere to go.
Now I know we shouldn’t have to force it down their throats, but we do.
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).