Hey everybody! I haven’t forgotten about you guys at all. In fact, I’ve been thinking about Holdin’ Out for a Hero and what I can do to further help our cause.
Today was a most exciting and overwhelming day. On our “blogiversary,” Sarykarmen Rivera of Central Florida News 13 en español invited me to the studio for an interview! I was thrilled to visit the studio again today, on Labor Day, even though it wasn’t as busy as it normally is due to the holiday. I interned at CF News 13 a couple of years ago, and have nothing but great memories of my experience.
During our conversation, Sary and I discussed the lack of awareness that abounds when it comes to people already living with spina bifida. I talked about my goals to start a national awareness campaign, to support young adults with spina bifida who are phasing out of pediatric care, and to educate the the public as well as the medical community about the urgent need to incorporate mental health into the comprehensive treatment plan for patients with SB.
The entire interview was ten minutes long, and I think that is a great opportunity, as we have not really gotten that much “airtime” until now! Sary informed me that, after the segment is edited, it will be made available on their Español On Demand channel for customers of Bright House Networks Cable. After it is made available, I will see if it is available on their site (I hope), and if it is, I’ll be sure and link to it here.
Thank you so much, Sary, for making this opportunity possible, and for demonstrating your genuine support for our cause! Love you, girl!
Now that the local (and hopefully soon, national) media channels are beginning to take interest in this project, a new challenge I am encountering is educating people about what it is like to be living with SB in a society that refuses to look at any other issue than prevention when discussing spina bifida. Folic acid is a great supplement that can often be effective in preventing spina bifida when taking long before getting pregnant, and I invariably recommend it to my friends when they are talking about “starting a family.”
But, people must also stop and realize that this information wasn’t available to my family when they were married. So, what now, you ask? Well, I graduated college, for starters, and I now have the support of many friends online through this blog and via social media, in addition to my ever-supportive family.
My parents must have done something right for me. Having spina bifida isn’t the most frustrating thing in the world. The most frustrating thing is talking to very educated people who seem to draw a blank when you ask them if they’ve heard of spina bifida. The most frustrating thing is finding out that the only apparent progress that the Congressional Spina Bifida Caucus has made is in recognizing October as Spina Bifida Awareness Month, and then going on to talk about prevention once they have “the floor.”
The most frustrating thing is to always be that girl who gets told she’s “doing amazing things, despite suffering from her condition.”
Why do people keep insisting on making me a martyr simply because I was born with spina bifida? It is partly because of propaganda by “prevention-oriented” organizations like the March of Dimes. While I totally understand the need for prevention education, I don’t understand how they can infer and assume that living with a chronic condition is something to be ashamed of, or to be devastated about.
It’s propaganda like this that plays a role in leading doctors to recommend abortion when they tell mothers their child “has no hope.” And yet, such propaganda is becoming a social force like I have never seen before. Take a look at this article on the Social Media Spanish blog, which discusses the efforts March of Dimes are undertaking to reach Hispanic people through social media, Tweeted by my friend, Elianne Ramos. (Gracias Elianne, as always, for sharing such relevant information for our times!)
Okay, so you’re probably wondering, “are you suffering?” Maybe, from time to time. I wouldn’t exactly call my public life with spina bifida a Valley of Tears– it’s more like I’m perpetually cringing internally. You want to ease my “suffering?” Tell someone about how women are still giving birth to babies with spina bifida, and how we need to come up with a long-term solution for providing access to support for future young adults with spina bifida. Tell them that a compromised quality of life is the price many with spina bifida are paying for society’s ignorance. Tell them that many people with spina bifida are finding it difficult to land a job or go to college, and that it’s even harder when most people don’t understand what it is they need.
Tell them we’re just like anybody else, and that it sucks that many people seem to think we suffer all the time. Isn’t that what they call a “self-fulfilling prophecy?”
Life doesn’t have to be this difficult for us. We can choose to help each other out in this fight, and that’s why I started Holdin’ Out in the first place.
Tell them people don’t don’t know we exist, that they want to prevent us, abort us, avoid us at all costs.
Tell them we’re here, we’re speaking out, and it’s time for others to listen.
Tell them, just so they’ll know.