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.
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.