Only Anecdotal

No numbers, just stories

A la recherche…

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Longtemps, je me suis couchée de bonne heure.” But not so much now, except at the end of a week like last week, which, like Proust, seemed to go on without respite, but with some satisfaction I hope in the end.

(The sentence is not mine, but Proust’s, not translated, because the translation gets too complicated. But here goes: “For a long time I went to bed early,” sort of, but it is also the first and only short sentence in the volumes that consumed so much of my younger years. Now, transplanted here into my blog, it is just the beginning of my next rant.)

Satisfaction, I admit, is a stretch, light of the season seeming to go out at just the wrong time as a few fear-mongering Senators came up with excuses around home schooling and parents’ rights and what-not to knock down ratification of the UN Convention on the Rights of Persons With Disabilities. Reading Santorum’s explanation in the Daily Beast, I find myself frustrated that he and the likes of Sarah Palin assume that they get disability and “special needs” children because they are parents. They have been there. And they have. Well. Kind of.

Truth is, I might agree that a parent is best equipped to make decisions about his/her own child, disabled or not. But I am quite sure that Santorum has never had to feel intimidated at an IEP meeting, or has ever had to fight too hard for accommodations, much less for ways to pay for the long list of services that his child might need. His claims that “international bureaucrats” would determine what is in the “best interests” for a child only reminds me of the countless IEP meetings that I personally have attended, for my own children and with other parents. So often have we gone in first wishing for what is “best” and learned that we can ask for what is “appropriate”.

Just to note, reading on in Santorum’s statement, I wonder if he really has any idea what he is talking about when I see things like this:

“How would this new standard play out in a battle between a single mom fighting a stubborn school district for special-education services for her disabled child under the Individuals with Disabilities Education Act? That landmark legislation signed by President George H.W. Bush made it clear that parents—not government officials using a “best interests of the child” standard—are ultimately in charge of their child’s education.”

All right, the single mom, poor single mom fighting the school. Been there. Done that. But what landmark legislation does Santorum mean? IDEA was reauthorized in 2004, signed not by George H.W. Bush, but by his son, George W. Bush. As landmark legislation, it was the 1975 special education act signed by Gerald Ford (yes, renamed I admit from Education of the Handicapped Act (EHA) to Individuals with Disabilities Education Act (IDEA) in 1990 under George H.W.) that was the beginning, truly. Maybe Santorum is confusing this with the ADA, which indeed was the landmark disability legislation under George H. W. Bush..

But I digress noting these sorts of mindless details. In the end, I am ashamed that we could not pull this off. I am glad that so many strong supporters came together to support ratification of CRPD, to promote disability rights worldwide, to support this human rights issue–but sad that they were defeated by a few fools. So sad that these fools use their power to walk backward in the world.

In the meanwhile, my hard-earned sleep came at the end of the week, a week of watching the Duals Demonstration Project as it rolls merrily along to readiness. No comment. Yet. I did have a dream where someone in a room next to a big important meeting was playing “Dueling Banjos” which of course begins rather quietly before all hell breaks loose, and in the dream, people in the meeting were becoming agitated in the process. I am sure this has nothing to do with the tense energy that seems to be building. We move forward.

But suffice it to say that I am planning on my full eight hours of rest as this rolls out.

More anecdotes next week. The stories continue, all compelling, trends continuing of burned-out (or injured/sick caregivers), aging parents of adult children with developmental disabilities (many of these adults now have health care issues of their own that are affected also by their disabilities). More to say, to think about, to wish for. Until next time…

Written by Only Anecdotal

10 Dec 2012 at 10:55pm

Posted in advocacy, community, disability

Tagged with , ,

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