Day 213- Rep. Raúl Grijalva (D, Arizona)

For the next 36 days (from March 28 to May 2),  I will be contacting and writing about 36 extraordinary members of the House of Representatives. They are all extraordinary in that they form the bipartisan Congressional Spina Bifida Caucus, and so they strive to address the unique needs of the spina bifida community in the U.S. My “mission” is to write to them, and urge them to make quality of life, and not solely prevention, a priority on their agenda in Congress. It has come to my attention that education about spina bifida is critical during all the stages of development– from planning to prevent spina bifida through the consumption of folic acid, to comprehensive education about spina bifida once it is diagnosed. We need to educate, starting with the physicians and other healthcare providers, so that they will be made aware of the potential that each child with spina bifida possesses.

I see this Congressional Caucus as a great starting point, as they have already committed to educating their colleagues in Congress about spina bifida.

A strong supporter of healthcare reform, Grivalva sits on the Disability Caucus in Congress.

Rep. Raúl Grijalva of Arizona is a man of great conviction and personal integrity. Elected to Congress in 2002, he is one of the most environment-friendly legislators in the U.S. In 1989, he had been elected to the Pima County Board of Supervisors, where he spearheaded the creation of Sonoran Desert Conservation Plan.

Congressman Grijalva is a member of the Committee on Education and Labor, where, according to his official Web site, “No Child Left Behind [is] his top educational priority for the 111th Congress.”

He’s also a crusader for the rights of his fellow Hispanics, and has served as 1st Vice Chair of for the Congressional Hispanic Caucus.

As you can see, he’s a man who enjoys wearing many different “hats.” One that interested me in particular was the one he wears as a champion for disability rights, as a member of the Congressional Bipartisan Disabilities Caucus.

Now, I’m going to be straight-up with all of you. I admit I’m having great difficulty finding articles, documents or even short blurbs detailing the projected goals of each of these caucuses (including the Spina Bifida caucus, of which Rep. Grijalva is obviously a member, or else I wouldn’t even be writing about him tonight). I barely find mentions of the Spina Bifida Caucus, except to list the members that make up this group. This is deeply disappointing to me, but I’m up for the challenge of finding the information we need. After all “Holdin’ Out for a Hero” is supposed to be about making people aware of the importance of discussing spina bifida, and it is certainly a point I’d like to make clear to the congressman when I write my letter.

Again, I strongly urge, and humbly ask, each and every one of you, to write letters or E-mails to your state congresspeople. I cannot stress enough the faith I have in the adage “there’s strength in numbers.” You all are my strength! So, please write to them, and flat-out ask them what they have done and are doing to serve the spina bifida community. If your congressman/congresswoman is not a member of the Spina Bifida Caucus, ask them what they are waiting for.

I’m sensing I will learn a lot more about this caucus when I receive replies from its members. I will have to get started on writing a general letter that I can make 36 copies of and send right away!

Shifting gears a bit, I know some of you were able to listen to the online radio show I was invited to be a guest on today! My friend, Christian Henríquez, whom I met via Twitter, just launched his new program, called “One Voice Radio,” on March 22nd. Today, Chris aired his second episode, during which he and I discussed my journey so far with “Holdin’ Out for a Hero.” He asked me about how spina bifida develops and how often it occurs. Other topics during our 45-minute conversation included how the blog actually began, the high incidence of spina bifida among Latinos, and also the types of surgeries that people like me often need to have done.

I thoroughly enjoyed my conversation with Chris! I had the pleasure of talking to him over the phone a few days ago for the first time, when he went over the logistics of how the interview would go. I think that initial conversation, and then talking to him again this morning, really helped me prepare a rough plan of what I wanted to address today.

The best part was that Mom and Dad made it home from work literally minutes before I called into the show, so they got to listen to it live from the PC in my room! Anyhow, here’s the direct link to today’s show. I truly hope you guys all enjoy this as much as Chris and I enjoyed our conversation today!

There is much more to discuss, but I have to go to bed. I have class tomorrow. I missed today due to severe allergies (again), but I don’t think I can afford to miss class tomorrow, too.

Buenas noches!

Laurita ♥

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7 Comments

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7 responses to “Day 213- Rep. Raúl Grijalva (D, Arizona)

  1. Wenchie

    Laura,
    You made the comment in your interview yesterday about the lack of knowledge about SB. That most people dont realize it’s the #1 reason for natural paralysis in children

    (I admit I didn’t know that either, but it makes sense as I think about it. When I was in the children hospitals back in the 70’s high percentage of the kids where there because of SP, spinal scholisis or leg pertheis (sp?) )

    Do you think that is because when people see a child who is paralyzed, that they are assuming another medical condition?

    What would people assume about your medical condition? Did they ever say?

    I remember growing up that we people saw me, they would assume I had SP so I got the other end of the spectrum reaction. For some reason where I grew up (here in the NE) many people were aware of SP, though mostly people would just ask me “what happened to you”. 😛

    These days I find people dont ask nearly are much as they did when I was a kid and teenager. Guess it must be because I at the age where they can also assume some sort of accident.

    • Laura

      Dawn,

      You pose some very fascinating, thought-provoking questions! Of course, it’s a tad difficult to be able to think back and recall every single assumption people have made about my condition.

      I might remember a few, though. I think people are probably more familiar with, say, cerebral palsy than SB. So, I’m pretty sure people might have assumed that. I’ve also been asked if I have MD (muscular dystrophy). That’s a pretty well-recognized one.

      Once in seventh grade, a girl asked me if I had a prosthesis. (WTF!?) Then again, I used leg braces back then all the time, so I guess I can understand how something like that can be confused for ummm….artificial limbs.

      I have been asked quite often if I had an accident. I might have been asked if it was polio, too, but then again I think there’s a vaccine now for that, so I may be too young to have had polio.

      These assumptions all surprise me, because I think I reached the point a long time ago when I can pretty much “diagnose” SB just by looking at a person! I can usually distinguish between CP and SB, because I’ve met so many people with both.

      I must admit, and it would probably make for a great “reflection” for a future entry, that I often get pissed now when I hear people ask, “what happened to you?” I know it’s not their fault they’re so ignorant, but how would they feel if I looked at them, and asked “what happened to you?” I’ve also gotten “What’s wrong with you?” I’m tempted to respond, “Well, nothing, really, until you asked!”

      *WHEW.* Sorry, I got just a little carried away there. Is my chip on my shoulder showing? LMAO. I guess that, as more common conditions get awareness, people will make different assumptions. In the meantime, what say you to a new tab on my blog– one for “Smart comebacks for ignorant questions?” It’ll be a HIT.

      😉 Laura

      • Wenchie

        “Smart comebacks for ignorant questions”. LOL. You made me laugh. 🙂

        I used to get the polio question a lot as well. When I used leg braces I once got a question if my legs were amputated (WTH?!? Go figure)

        You know the old adage “Ignorance is Bliss”?

        Well, maybe it’s bliss for those who are ignorant. For those of us educated, ignorance is a pain in the A$$. HA! At least it has been such in my experience. 😉

        Yea, I too would get the “what’s wrong with you”. (Cringe)

        I dont know if you have ever experienced this since you are a tad (well more than a tad) bit younger than me. But I would be with family and friends, and people would invariably talk to them and ask questions about me as if I were deaf or had some sort of intellectual limitation. Or couldnt speak.

        I havent had that experience is years (YAY) so maybe that sort of ignorance has significantly died off?? I can only hope.

        Trying to smash stereotypes has been no easy task.

        (And I admit the older I get the more weary I grow over it…Can I pass the torch on to you .. 😉 😀 LOL )

      • Laura

        Hey “Wenchie!”

        Yeah, times haven’t changed too much…unfortunately for me. People still often talk to my parents or ask them questions as if I’m invisible. I wouldn’t say it happens all the time, but it does happen. I think I make a conscious effort to wear an “intelligent” look (whatever that is!), so as to encourage people to ask me questions instead of trying to use an “interpreter.” Of course, by now, I would think my parents know better than to answer for me. They know I HATE that.

        As for the torch, allow me to throw it in the nearest river!

        Hugs,

        Laura 🙂

  2. Kelsey Mishkin

    Hi – Thank you for the kind posting, I admire your mission. I wanted to let you know that I work on health care issues for Congressman Grijalva. Didn’t see an email listed but if you would like to chat, please feel free to give me a call in our DC office.

    Best,

    Kelsey

  3. Nick

    I too have gotten the ‘what’s wrong/happened’ comment. My weirdest was back in high school.

    He asked ‘ I heard a power line landed on your legs that’s why you walk that way’.

    A million volts would KILL me right!?!? 😛

    • Wenchie

      Nick,

      You win the “Receiver of the Most Bizarre Comment”!!!…. 😛

      Power line on your legs?!?!?! OYYYY …. 😉

      You have a wonderful day and a great weekend…

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