Friday, October 3, 2014

Why We Still Need "Awareness" Campaigns







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.

Earlier this week one of my old blog posts was
featured on this great new site called The Mighty.  So I was on their site today and I saw a post called "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.  

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13 comments:

  1. Terrific insight. Another sad fact is the over abundance of awarenesses in each month. That is a whole lot of awareness that is just not out there for the general public. Do a engine search and unless you put specifics it will take you a while to find a comprehensive calendar. It would be terrific if instead of standing in our own bubbles, as you aptly put it, the special needs community could stand together and educate the general public as a whole. Individually we are strong voices advocating and educated. That is a lot of potential.

    October - Domestic Violence Awareness Month
    For more information visit the National Coalition Against Domestic Violence
    www.ncadv.org

    October - Healthy Lung Month
    For more information visit the American Lung Association
    www.lungusa.org

    October - National Lupus Awareness Month
    For more information visit the Lupus Foundation of America, Inc.
    www.lupus.org

    October - National Physical Therapy Month
    For more information visit the American Physical Therapy Association
    www.apta.org

    October - National Spina Bifida Awareness Month
    For more information visit the Spina Bifida Association of America
    www.sbaa.org

    October - Sudden Infant Death Syndrome (SIDS) Awareness Month
    For more information visit the First Candle/SIDS Alliance
    www.firstcandle.org

    October - Health Literacy Month
    For more information visit the Health Literacy Consulting
    www.healthliteracymonth.org

    October - National Brain Injury Awareness Month
    For more information visit the Brain Injury Association of America
    www.biausa.org

    October - National Down Syndrome Awareness Month
    For more information visit the National Down Syndrome Society
    www.ndss.org

    October - National Liver Awareness Month
    For more information visit the American Liver Foundation
    www.liverfoundation.org

    ReplyDelete
  2. You could not be more correct. I was just thinking about this today. Maybe a page needs started. Something along the lines of "My kid has this." A page where parents of kids of any ailment can come, vent, post, and educate other parents about what is going on in their lives. It would be a small step, but I think people might respond to it. I would like to think that most people would want to educate themselves beyond their own bubble, but I know how easy it is to be consumed by your own.

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    Replies
    1. I think that is an excellent idea! Would certainly spread awareness for many conditions.

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  3. It true most only know what going on in the bubble an unless you have a friend or family member with xyz you don't no about it that why I love this "quote by DR Seuss
    Unless someone like you cares a whole awful lot,nothing is going to get better it's not

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  4. Well Said. Well Said. Every time I go to a parent teacher meeting with the years new teachers, I am Aware how lacking Awareness is.

    In a different angle but in the same spirit...I have also seen the people who Need the Awareness...waste it. And reject it. If they feel it may be taking away from "Awareness" from their own cause. It is amazing what happens during a campaign. Perhaps the most atrocious thing I saw was the uproar from people AGAINST the ALS Ice Challenge by those who have a different illness or chronic condition affecting a loved one or themselves. Why? Because they were bothered for a moment that instead of colored ribbons, 5k runs, lemonade stands, bracelets, and candle lit memorial walks for 'their cause', ALS was getting some spotlight. They never get spotlight, except tragic news like when a mother took the lives of her 2 sons in a nursing home. After she had already buried her husband with the same illness. Or someone famous is diagnosed and it passes through the media for a moment. The naysayers were upset because it went viral and raised almost 100 million dollars MORE than it Ever has. Ever. It took in 2 million last year comparatively. And that was a bad thing apparently for those who have some other condition; not ALS. And they tried to hide their feelings except they kept putting a But after whatever kudos they gave the Ice Challenge.
    "That's great for them But! remember such and such organization...."
    "I am happy for them, BUT..."
    "Glad they raised money, But only 10 percent of the money will go to...."
    But But But....Anything But. That is what they chose to do with their awareness....try to convince others Not to donate to them, or better yet! Do the Ice Challenge but give their money to a different organization. Mixed in were the typical bandwaggoners, just doing some cool thing they saw on facebook - but no interest in the donation part or what ALS is. And I even read comments that went the same route the anti-Autism Speakers do, the old eugenics argument: "don't donate to them because they do research that kills babies"! - I mean it. There was an article with that click me title going around. And all because this organization was having a good awareness moment. THEY NEVER GET ANY good moments, it is 100 percent fatal and incurable. No remission. No real treatments. Just progression. This was some good news, actually started by a football player living with ALS and a chance to open up some eyes and have a conversation about his disease. And for the most part, it really did just that! Summer of 2014 will be known for ice bucket challenges, and groups of people rallying for the cause! and I am glad. I just couldn't help but notice the "other" group unable to pull it together for a cause not their own. Yeah. Awareness, no matter what the reason, still has a lot of work to do. And throats to cram into.

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  5. I am willing to bet that Autism Mommy knows what Spina bifida is and took folic acid during her pregnancy because I think doctors are pretty fanatical about it. I love your blog and FB page although I am not an autism parent. I am an aide for kids with autism and other special needs. Keep up the good work!

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  6. I was not told to take folic acid when I was pregnant with my son who has Autism. He is only five, so my pregnancy was not that long ago. It sticks out in my mind because there has been a lot of news stories lately linking folic acid to Autism prevention. My doctor has delivered thousands of children. Maybe because we live in the Midwest, the folic acid trend has not reached us yet.

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  7. Brilliant. Simply brilliant. People don't truly become aware until it becomes personal and then the awareness is powerful and transforms into understanding and then acceptance.

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  8. great insight we need to hear more of real stories in that awareness such as my story about bringing my daughter home from her group home to have rosh hoshona dinner with me husband my son and his girlfriend who was eating with us for the first time mt daughter pooped her pants came into our apt and would not get out of the bathtub till we told her she was going back to program luckily my sons girlfriend has a special ed sister so she understood so no matter how perfect I wanted things to be and how I did not want to hear its okay mom from my son the queen ruled the roost as she usually does and our world revolved around her which I must confess I admire when dealing with people as bossy as my mother in law

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  9. Well said AD!

    October is also Dyslexia Awareness Month another neurobehavioral difference that occurs on spectrum. A diagnosis I was well aware of but am only recently passionate about because, ta-da: it effects my family very personally.

    My newsfeed is lighting up with it and as a Dyslexia Mama, I am trying not to saturate my friends with reposts.

    http://www.decodingdyslexia.net

    Thanks for saying it so eloquently.

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  10. So true. Ashamed to say that before my eldest was diagnosed Aspergers I had never heard of it and was really unaware of Autism in general and the varying levels within the spectrum. By the time our second son was diagnosed non verbal autism I'd learnt a whole lot in a big hurry. Pays to think back 5 years to where I really knew nothing because that is what the majority of people know if Autism does not effect their life. Now needing to learn about Dysgraphia which is a newly diagnosied co-existing condition to add to my eldest son's list

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  11. I love this post! I"m a teacher of exceptional children from those who have severe autism to learning disabled, etc.. My oldest grandson also has autism...severe/non-verbal so far. I jump on the bed with him, play in the dirt and puddles, and let him ride in the cart...safer for him... etc..etc... And at school, when there's no one looking I run down the long hallways with my kids. Some of the people who posted above need to get the stick out of their butts! The parent is the child's best advocate, and we as teachers should respect their opinions

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  12. oops..this was supposed to be posted to the 12 things post... sorry... I'm enjoying reading all your posts. My daughter loves your blog. She can really relate. She's on the third time potty training my grandson this week :) She's my rock star daughter, and he's my rock star grandson!

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