Day 211- Rep. Bart Stupak (D, Michigan)

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.

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Stupak's initial hesitation to support healthcare reform, and his last-minute endorsement of it, has made him a target of criticism by both Dems and Reps.

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!

Love,

Laurita ♥

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6 Comments

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6 responses to “Day 211- Rep. Bart Stupak (D, Michigan)

  1. Wenchie

    You said..”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….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.”****APPLAUSE********Biggest challenge for people who happen to have to deal with a medical situation is the attitude by “mainstream society” that we are somehow “different”The stereotypes that people with medical situations have to deal with can be so suffocating, and certainly very discriminating in many sectors of society. Been trying to destroy these stereotypes for most of my life. We are individuals first. Women, men, daughters, sons, wives, hubands, brothers , sisters, cousins, friends etc…..and somewhere on that list we do have medical conditions to deal with. But those should be much later Down the list in the eyes of society. NOT smack dap on top.Thanks for your well thought out post, Laura. 🙂

  2. Amy Quintanilla

    As a parent of an 11 year old boy with Spinal Bifida whom is tring to figure out why him and at the same time trying to not stand out. My APPLAUSE also go out to you.Thank you so much

  3. Laura

    Dawn “Wenchie”: Don’t you have a blog? If you don’t, you should definitely START one! You express yourself so beautifully. I’d really like to see you on the “blogosphere,” even if it’s just every now and then (because blogging on a daily basis can be very daunting!) Anyway, just letting you know I read your comment, I appreciate that YOU appreciate MY writing, and if you start a blog I will make sure and support it!And, YES– I am, first and foremost, a Christian (which is not to say that people who are of other denominations are wrong; I think everyone should believe in something positive!). Next, I am a daughter. I am a cousin (I have no siblings!), a granddaughter, a niece, and a friend, a student, and then somewhere in there is “journalist,” but I just haven’t figured out where that would go! LOL. Thanks for making me smile, as you usually do!Hugs!Laura 😉

  4. Wenchie

    Amy, my prayers to you and your son. The path can be so frustrating and painful.The “why him” part? Dont dwell on that too much and certainly dont beat yourself up. Parents can do that sometimes. My own mother did. In some ways it was an expenditure of energy that could have gone elsewhere. At least that was true of our situationI work on a farm and one of the greatest lessons I learned is that sometimes in nature things simply go wrong, go awry. No one is being picked or singled out. We are all born into a world where things sometimes just dont go as we hope, as we dreamBut also one of the OTHER greatest lessons I learned is that God’s grace more than provides and assists to those who are open to that grace. I have no doubt you will be given the very strength, courage, fortitude that you will need. Blessings to your son, you and your family.Dawn 🙂

  5. Wenchie

    Well thank you for your encouraging words. Never really seriously considered doing a blog. (I could call it “Rantings of a Wench” 😉 ..HA!)In all seriousness, it would end up be very sporatic. When we are heavy into farming season, I come home dead beat. ;)I think your desire to be a journalist is great. Be the best one you can be.I’m a HUGE information/news hound and tend to be very anal about facts. I have the highest respect and admiration for good solid journalism.Have a great day, Laura. We are getting so much rain up here that the lumber yards I hear are running out of wood cause people are building arcs. 😀

  6. Laura

    Hi Amy!Aw, I really appreciate the encouragement! My prayers and blessings go out to your son. Let me tell you, I now believe EVERYTHING has to happen for some reason that God sees and we don’t. We don’t know the reasons, the logic behind the course our lives take, but HE does. I will probably never figure out all of the reasons for “why me” as it relates to having spina bifida, but I now realize that this blog is one of the reasons– I was meant to do this, and to go through everything that has brought me to this point, so that I could share this with others. Living with spina bifida is no day at the circus. Truth be told, it often sucks. But I hope and pray that, as your son grows and comes into his own, you will discover his purpose in life and that you’ll see how spina bifida fits into the picture. Take heart– if anything, I’m sure he’ll grow to be a very compassionate person because of his experiences. And this world could use an abundance of compassionate people!I’m rooting for you & your son!Hugs, Laurita 😉

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