Day 231- Rep. Fred Upton (R, 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.

So, the celebration of Main Street Republicans continues! Rep. Fred Upton of Michigan is very much a Main Street legislator. He is a supporter of stem cell research, and is a member of the House Centrist Coalition. He does, however, take a mostly pro-life stance on issues, which is a very good thing for the spina bifida cause.

Upton is a member of the Subcommittee on Telecommunications and the Internet, handling issues such as "telemedicine."

Additionally, Rep. Upton is a member of the Diabetes Caucus,  and of the Medical Technology Caucus. He has a B.A. in Journalism from the University of Michigan. Very cool.

Congressman Upton is known for his informal rapport with his constituents, often urging them to “call me Fred.” According to his Web site (linked above), “Fred has also been leading the fight against cancer in Congress, and continues to push for a greater emphasis on research and development to improve the public health.”

I seriously can’t wait to write to him! I read that he personally signs all replies to letters, and that he often even adds personal comments. We’ll see!

Again, I want to address the topic of our Facebook Fan page. Thanks to all your support, we now have 86 fans! But, please, let’s not stop there. The voices of spina bifida need to be heard, and this is a great opportunity for those of you who want to get involved with a good cause, but have very little time to devote to it. All you really need to do to help this cause is become a fan– and tell others to become fans, too. This is important, because if you really want this cause to succeed, you can’t allow it to stop with you. Please, please share the page with your friends on Facebook, and invite them to join!

That’s all for tonight. I’m so happy I was able to chill for a while after Church with Mom at one of my local favorite haunts– Le Café de Paris. I was having one of those “I never get to do anything on the weekends” moments (even though I partied late at Art of the Vine last night!). I wonder if this is just an “only child” thing, or if it’s a “spina bifida” thing. Do any of you feel like growing up with spina bifida has led you to become more socially isolated? Your comments on the subject are welcome!

Peace out, and have a great, socially-satisfying weekend!

Laurita ♥

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4 Comments

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4 responses to “Day 231- Rep. Fred Upton (R, Michigan)

  1. Wenchie

    Im off to Church myself right now, but I will get back to the “socially isolated” issue when I get back.

  2. Wenchie

    Ok. Back. My thoughts on the socially isolated experience of being a paraplegic

    (there isn’t a character limit on the posts, are there?)

    First, I should point out that this is coming from a woman who has been a paraplegic for 38 years (my being 45 years old at present) so I can only really speak to my own experiences, my own journey, my own observations.

    1) On friendships–Early on after the paralysis set in, my medical situation certainly took a toll on my childhood friendships. How could it not? I wasnt capable of climbing trees, riding bikes, running around on the playground during recess. And back then (early 70’s) mainstreaming wasnt part of the landscape so I wasnt even ALLOWED on the playground, or even the school bus

    (and get on the school bus I could because at that time I was using long-legged braces and forearm crutches. Getting on and off buses was part of the reason I spent 5 months in a hospital going thru rehab—to learn a bunch of new skills so that I could be part of “society” again)

    Only problem. Society wasn’t “ready for me”. So I wasnt allowed to play on the playground (they–school officials– were afraid of my getting hurt. IE liability. Same with the school bus–I had “special transportation”—yes that was the label of being picked up by some person, designated by the school system, driving a car. “Special transportation”)

    But–GET THIS–if there was a field trip or other some special event. I was allowed to use the school bus—GO FIGURE!!

    So right off the bat, I was physically, literally, socially isolated from my peers.

    Hell, it could have been worse. When I finally stabilized medically and that 5 month hospitalization period for rehab was over, the school system turned to my parents and said “where do you want to send her to school. We will send her anywhere. All paid for”

    My mother was having NONE OF THAT BS. She told them “Im just getting her back. She is going no where. You are going to make the necessary changes and arrangements here so she can go to the local public schools.

    Im am the first student from Glastonbury High School to go thru the school system and graduate who happened to have a physical “disability” (gratefully there have been others since then).

    I am a GHS 1983 graduate. It would still be about a decade before ADA was signed into law by Pres Clinton.

    I was well like and respected in High School. Student body officer, Class officer etc. But I still didnt really have friends. My peers didnt see me “that” way. Someone that you hung around with. Someone that you went out with and did stuff with.

    Both my brother and sister had tons of friends. Always talking on the phone. Were always going out with them to the movies and other normal “teenager experiences”.

    College was a bit better, but still not by much. Again it was the 80’s. People with “disabilities” out in the public was very new. Mainstreaming was at its cusp. But progress was being made.

    As the years went by, things got better. Much better. At least when it came to friendship and being seeing as equal and intelligent. It was more common to be included in doing things with others, although I would still hit the occasional and very ignorant attitude where others would make the determination for me what I was capable and not capable of doing

    (what comes to mind was a river rafting trip in Wyoming. But that is a long story. Suffice it to say that I ended up feeling I “had to go” in order to “teach a lesson” for those who try to keep me from going, and not because why I had wanted to go in the first place. I wanted to go orginally to just have a good time. I ended up having to be “an example”…P-Oed me in the biggest way. I hate when others, who dont know squat, feel they are the best at judging what I can and cant do…ARRGGGG)

    So, that kind of isolation has gotten better over the years.

    Now, on to the other kind.

    Dating and romantic relationships.

    Things havent changed much in that area. People, (in my case, men) still seem someone with a “disability” somehow not a viable lover or companion, or spouse.

    I think, in part, it has to do with a subtle idea that those of us who have mobility limitations are somehow asexual?!!? (as if my not being able to wiggle my toes means my hormones are somehow paralyzed as well??…I mean, yea I am not capable of the 101 positions of the Kamasutra, but then neither are most people..HA!!)

    I know that my hardware (what I call my wheelchair) presents a very, very powerful visual. And that visual comes with a boat load of stereotypes. (Ignorant and completely niave stereo types)

    Ive tried for decades to try an smash those stereotypes, but often feel I have failed.

    The men I have known cant get past the hardware. Many of them want what the media tries to sell all of us. That, in order to be “desirable” one has to “look” a certain way. I call it the Great Lie, or the Great Illusion of our culture.

    But the phrase that I hear get tossed around a lot is “personal preference”

    Ok. I get “personal preference”. I have mine, too, of course.
    But I’ve had personal male friends who “hook up with” or “date” their “personal preferences” and they invariably find that just because a woman “looks” a certain way and fits their “personal preference”, many of these same non-physically disabled women are far more emotionally (and spiritually) handicapped (Yes, “that” word, because their problems are attitudinal ) that I have ever been.

    And they dont seem to get it. And they end up going out with the next woman who is just as pretty as the last, and just as emotionally messed up.

    But it is there “preference”

    I sit back and say “so—how is all that ‘personal preference’ thing working out for you these days?”

    I then chuckle…turn around…and wheel away in the opposite direction.

    I may be single and alone (not by choice), but I am at peace and am not in an abusive relationship, as so many of my peers are these days. Relationships that are often times ending up in divorce.

    SOOO—-those are my observations about being socially isolated in the 21st century and how it has changed since I was a kid in the 1970’s.. 😀

  3. Wenchie

    (sorry for it being so long…but you did ask Laura.. 😉 )

  4. Laura

    I did ask– and so glad I did! What an amazing story! It blew me away!

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