Monday, February 20, 2012

On caring...

Longtime readers know that my older brother is autistic. I’ve written about my experiences as a co-guardian…my encounters with the system…and my general stress over balancing my guardianship role with my wish to just be his sister.  I’ve also written about those sister-brother moments that make all the drama I experience as a guardian worth it.

Well, I made dinner for my brother’s house Saturday. He has two roomies and they all have staff on site 24 hours a day. I brought over peppercorn pork loin, cheesy potatoes, and a salad…all of which was demolished, much to my pleasure.

I returned home to news about a certain Rick Santorum and his remarks about how Obama “looks down on the disabled” by supporting prenatal testing…because on Santorum’s planet prenatal testing is a tool designed by heathens to do away with all detectable disabilities. In the real world…prenatal testing allows expecting parents to know the detectable health status of their pregnancy.

That wretched ‘liberals don’t care about the disabled’ bullshit is just the latest in a long list of Santorumisms that Rick likes to spout and thinks he’s particularly empowered to spout because he has a daughter with special needs.

I’ve got news for the Santorums of the world – your policies barely meet the basic needs of my brother with special needs.

Y’all can use this issue as a campaign tool when you bring your political GPA above failing.

You care?

Well, my brother shouldn’t be told by his state that making $100 a month at a job disqualifies him for Medicare coverage…because conservatives under the dome passed a “reform” to punish poor people without giving a shit that many disabled people are poor.

Still caring?

My brother shouldn’t face a monthly food allowance of $160 per month…because conservatives under the dome think hunger is a motivator and fail to grasp the reality that special needs children will become special needs adults who still have…wait for it… “needs” like food.

And let me keep it real – we are the lucky ones to only have that shit to fret about.

I’ve had it with politicians using people with special needs to score political points with a base that can’t be bothered to employ, volunteer with, or look a person with special needs in the eye.

Oh, they talk the talk.

But they all too often fail to walk the walk.

That could and often would include autism treatments and therapies…just think of all of those kids with special needs that will be denied coverage simply because their parent’s employer claimed a moral objection.

And while you hesitate…Missouri already has incidents of “church plans” denying coverage for autism treatment even though the church in question has no apparent religious objection to autism or people with autism or the parents of people with autism.

Spare me the campaign rhetoric about who "cares" about people with special needs.

I’m from Missouri - you’ve got to show me.

***cue crickets*** 


Esteleth said...

Mmhmm. I hear you on this.
Autism (and associated spectrum disorders) is rampant in my family, which is something of a mixed blessing. The "high-functioning" people are able to get good jobs as engineers (etc.), thus getting the insurance and $$$$$ (I don't have to tell you about the need for THAT, I'm guessing!) needed to help their siblings/children/cousins.
It seems every damn month brings another fight with someone or another (insurance, Medicare, administrators of group homes...) over what is and is not "needed."
The latest was the oh-so-helpful bureaucrat who asked why Cousin Steve (not his real name), who is 87, nonverbal (as he has always been), diabetic, and suffering from Parkinson's (and very frightened about it, as he doesn't understand it), couldn't go to an ordinary nursing home for his end-of-life care?
Then of course are the endless battles with people who believe (today! in 2012!) that women can't be autistic, she must "just be retarded" (!) or something.

Uh, sorry, that turned into a rant. Basically, I hear you. I love reading your blog in general, and when you talk about your brother in particular. He is blessed to have you in his life and caring for him. Keep up the good fight!

Anonymous said...

I hear they are going to remove Asperger's Syndrome from the DSM, which may make it harder to get coverage also:

PortlyDyke said...

What is amazing to me is that they think by saying: "We care," any of us are going to fall for it.

Caring is action, not words. Caring is bringing your brother's house an incredible meal (the description of which made my mouth water, btw).

I think about folk who DON'T have a wonderful, caring sister like you. It's why I keep writing letters, signing petitions, helping out -- even when I feel discouraged.

pluky said...

Not meaning to minimize the struggle and pain the Santorums must have in dealing with the consequences of their daughter's aneuploidy, does he realize the agonizing depths reached by some of the conditions revealed by prenatal testing. So agonizing that therapeutic abortion is a mercy compared to live birth. Tay-Sachs, for example.

Mark said...

AMEN. I'm gay and disabled and want to convert to Judaism (apparently, like Sammy Davis Jr., I was worried about not having enough minorities to represent, LOL).

So anyway, I totally agree with you Pam. Too often politicians, particularly conservatives, float empty rhetoric past us about their so-called "compassion" for the disabled without explaining, in concrete detail, what reforms they will enact, what policies they will support, what programs they will modify or launch to ACTIVELY support our welfare by deed as well as by words. I'm reminded of Sarah Palin's utterly vapid remarks at the Republican National Convention a few years ago, where she said she "had a special place in her heart for special-needs people" or something of the kind.

As they say, talk is cheap!

Thank you for discussing this issue. As a disabled gay Jew-by-choice, I fight these battles all the time.

Much love and blessings to you!!

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