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.
Hello all! I bet you are all just as thrilled as I am about embarking on yet another journey with “Holdin’ Out for a Hero.” First off, let me assure you that this caucus is completely bipartisan, so I will be contactING both Democrats and Republicans. Since these are all key people in the legislations that are passed in our names, I think it is of the utmost importance to let them know that people currently living with spina bifida, and its accompanying conditions, are expecting more from them.
Last week, Rep. Bart Stupak ultimately made a decision that has him taking the heat from both left and right. He agreed to vote “yea” on healthcare reform, and that is costing him his reputation on both sides. Democrats are saying he is responsible for holding up the passage of the bill; Republicans are saying that the fact that he signed the bill means he is no longer pro-life.
But, disregarding his being “fashionably late” in supporting the bill, I am grateful to him that he agreed to support us all with his vote.
For all the Republicans, to his credit, he did not waver until Pres. Obama agreed to sign the executive order prohibiting the use of taxpayer dollars in funding abortions.
For all the Democrats…well, let’s just say he finally made up his mind!
Given Stupak’s strong anti-abortion views, I think it is crucial to tell him about the many women who have abortions after finding out that their child will have spina bifida, and about the doctors that are advising them to have these abortions.
But enough speculation. Let me brief you on what I now know about Rep. Stupak. In January 2007, he addressed House Speaker Nancy Pelosi as Co-Chair of the Congressional Spina Bifida Caucus, to recognize “January as Birth Defects Prevention [month] and the week of January 8th through January 14th as Folic Acid Awareness Week.”
The congressman continued, saying, “I encourage all of our colleagues to help spread the word about the importance of folic acid consumption.”
Although I am pleased to read about a congressman addressing spina bifida in the House, I am somewhat disturbed that his lengthy statement included more information about the possibility of fortifying corn products with folic acid, and virtually no information about the development of quality of life programs for individuals with spina bifida.
My point: everyone, congresspeople included, are more concerned with trying to “prevent” us, rather than committing to helping us integrate into mainstream society. As citizens of this nation, we have a right, and also a responsibility, to make ourselves known, seen, and heard. Like I mentioned before, I will be writing to each of these caucus members and telling them my story, so that they will hear the voice of one person with spina bifida, one who couldn’t be “prevented.” I would encourage all of you to do the same, if you can!
This isn’t to say I don’t fully support public service campaigns that educate people about folic acid. I fully support them. But, the statistics all say that folic acid only prevents approximately 70 percent of the cases. Folic acid isn’t going to help me get a better education. It’s not going to help make my college community more accepting or understanding of my condition.
Folic acid isn’t going to encourage employers to consider hiring people with spina bifida who meet all of the job requirements.
Folic acid isn’t going to get us one step closer to having the world view us as “complete” people, and not as “disabled” people.
No, it won’t help any of that…but, for what it’s worth, I eat all my vegetables!