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To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment. Ralph Waldo Emerson said it; I believe it.

Sunday, August 31, 2008

A Choice About Choice

Okay. So. The republican VP candidate is Ms. Sarah Palin, Gov. of Alaska. Much adu is being made about her pros and cons, some possible scandals and the like. I will let the professionals handle that. My main concern about Ms. Palin is reflective of my main concern about most republicans in general: their desire to legislate morality, regardless of how reckless and cost-ineffective that aim may be. Ms. Palin is a staunch pro-lifer. So much so that she would legislate against terminating a pregnancy, EVEN in the case of rape, incest, or in cases where the life of the mother is serioulsy threatened. My argument is, and has always been, that's okay for YOU, if that's your plan, but please do not attempt to legislate the way I live my life or the decisions I make for my family. Those things are clearly outside of the realm of government and for good damn reason Ms. Palin, et al. Now I have made my case, but I also have heard the case but more eloquently than this. Check out the following comment from this blog, from a mother who, in hindsight, would like the choice to make a difficult choice. The personal statement is honest and candid and must have been very difficult for this mother to make. I commend her for saying what so many can not....

Mother Who Thinks (11:49:42) :
I am a mother who thinks. I am a mother of a child - now 21 - with Down syndrome. I am an Alaskan who raised her child in Alaska (along with another kid, a husband, an education, and a job with benefits.)

IT IS THE HARDEST THING I EVER DID. It took everything I had, and more. There were highlights - but they in no way balanced the demands, frustrations, and dark nights of the soul. The impact on my nondisabled son is still being felt. My marriage effectively turned into a parenting partnership with no future that escaped the impact of having a child with significant and inescapable needs.

I was, by our society’s standards, well-equipped to cope with this unexpected aspect of parenting. It devastated me nonetheless. When my son was born I had no idea what lay ahead. It was gut-wrenching determination and motherlove that carried me forward. I still can’t count it a success.

I learned, through much hard work, how to navigate the system that we all think exists for “all” children and adults with disabilites. Had I not been intent on accessing services, finding out how agencies and regulations work, and forcing them to work for us, the outcome would have been far worse for my child, family, and self.

Had I been less able, less determined, less economically able, less educated….I don’t know how I could have survived to “make the best” of the life I had been handed. I can’t count the times I thought, “What do other parents do? I want to quit trying to make this work.”
Do I wish I could have been spared this challenge? Make that a resounding YES. Do I think that my child should have been spared the difficulties, loneliness, heartache, and exclusion that disability, by nature, means? Make that a YES too. Would I have chosen to terminate the pregnancy had I had the foreknowledge and choice? Yes, even from the other end of the trail, now that my child is grown in years but will forever remain a child, dependent, vulnerable in an uncertain world.

What disturbs me most about Sarah Palin’s choice to continue her pregnancy, knowing that her child would have Down syndrome, is that she would make that choice for me, or my sister, or my daughter, or my friends, male and female alike. No one can decide for us. Certainly not “government” who cannot be counted on to help the hundreds of thousands of those with disabilities, already and to-be-born.

Oh, and have I mentioned this? I, who through struggle and persistence and crisis, mastered the service and funding system, have a reasonably happy kid. He still and will struggle through his lifetime with mental retardation and related behavior and communication issues. He lives in federally subsidized housing, attends public school as an intensive-needs student, gets his healthcare through medicaid, and has 24 hour care from direct service providers. When you make the system work, you can build a community-based life for your child.

Only a small percentage of those who need this level of care can get it. Without advocacy, forget it. Without continued funding of education, healthcare, vocational, and independent living services, this will all go “POOF.” The waitlist, even in a small state like Alaska, has over a thousand people on it, many for years. Most languish at home with aging parents or siblings. Some are receiving “care” in corrections while they try to find someone to “take” them. Some are homeless.

My son’s cost of care is over $200,000 a year. Thank you, taxpayers. And the Chinese lenders.
Palin has delegated the care of her infant with Down syndrome to others. I don’t know how this can be done, emotionally or financially. Kudos to her if she and her family pull this off. They are well-positioned financially, socially, and politically to do this. I think that this is not an option for 99.9% of families who include children and adults with disabilites.

To take the position that EVERY American family SHOULD and MUST be denied the option to terminate a pregnancy that will result in hardship, cost, heartache, and diminished possibilities that will last a lifetime is just plain wrong. I could never support a candidate on any ticket that would take the hardline prolife position she takes. She can no more use her experience to decide for all than I can.

But it is about CHOICE. About REALITY. And no one can decide that for someone else, and force them into the netherworld of disability.

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