Love It Or Leave It

Remember that saying? I think it's what the conservatives said to the protesters in the sixties. Not a day goes by that I don't think about where I'd like to move if I could move. I don't know why I don't have a strong sense of "country," or even a modicum of patriotism. I consider myself blessed to have been born here to a life of relative privilege and am grateful for how my parents brought me up, but I don't think of America as the greatest country on earth nor am I grateful for my country in the abstract.  The older I get, the less inclined I am to feeling proud of being American, given that I can sometimes only summon up the observation that we (so far) can go to the polls and vote and not get shot. Lately I'm just sort of overwhelmed by what's going on with the gun control clusterf*^k, the Drumpf thing, the fact that each summer gets hotter (it was 108 degrees in my driveway yesterday) yet people I know are climate change deniers, that the treatment for infantile spasms is roughly the same in 2016 as it was in 1995 yet millions of dollars have been spent for research, and that I don't have anything in particular for Sophie to do this summer, the 22nd of her life.

Let's talk about that last thing first. The LAUSD messed up as per usual and didn't assign an aide who knows Sophie to accompany her to summer school. When I made a modest stink about it during the last week of school, I got the runaround with the usual requests for me to speak to Downtown. For those of you living in the hinterlands, Downtown is where The LAUSD headquarters are, and I imagine it to be a box similar to the one in Oz where one ridiculous man stands behind a curtain and fiddles with a bunch of knobs. I did attempt to reach Downtown but never got a call back, and repeated requests for Sophie's school's Special Education Office to help me only resulted in the advice to call Downtown or to accept the fact that we are not required to supply an aide that knows Sophie. 

Today I got a notice in the mail letting me know that if Sophie doesn't show up at her assigned Summer School Location next Monday, she will be withdrawn from the system.

Cue Mrs. Braddock's screaming laugher.

Reader, I've folded.

I've given up.

I realize that asking for the obvious from The Man Behind the Curtain was a fool's errand. Yes, I could have packed a proverbial pistol and fought The Man with my silver tongue, but I'm plumb sick of fighting for mediocrity. Sophie's home this summer, and you should know that for young adults like her with severe developmental disabilities, there are few programs and not much to do. I'm not saying or even thinking that we're somehow entitled to programs. I'm just stating the facts. This is what life for the severely developmentally disabled young adult looks like in Amerika. The programs that do exist are often very expensive. I did sign Sophie up for one day a week of what looks to be a terrific summer camp, but the daily rate is about a million dollars, so I'm going to have to get creative for the rest of week. Saint Mirtha will be coming to help entertain and take care of Sophie, and damn, I'm grateful to have the means to pay her.  I'm grateful for everything I have because I know that many people don't have even a third of what I do, yet they keep on keeping on. We'll keep on keeping on, too. That picture up there is Sophie trying out the swing in the gym where the camp is going to be.

I started this tedious post by kvetching about moving from the country, how not a day goes by that I don't have some sort of fantasy of packing it all in and heading to Costa Rica or an adapted watchtower in one of the Canadian national parks or a hut somewhere in Mexico. I'll bring one pair of jeans, one bathing suit, a couple of black tee-shirts, a few bare dresses and maybe some panties and a bra but not much else. Does anyone want to join me?

How We Do It, Part LVII

 

 To engage your humor and your emotions, that’s quite a trick. I’d like to think that I’m able to do that, to keep the reader off balance—is this the universe of the comedy or the tragedy? or some unsettling admixture of the two?—to go beyond mere satire into something more emotionally devastating, and gratifying. If that ain’t art, I don’t know what is. 
T. Coraghessen Boyle 

Spin.

What we tell the siblings of the one with special healthcare needs, despite.

What we tell ourselves about the siblings of the one with special healthcare needs, despite.

What we tell one another about the siblings of the one with special healthcare needs, despite.

What others tell us about the siblings of the one with special healthcare needs, despite.

Spin.

What we tell ourselves

What we tell one another

What others tell us

1. You're really strong and developing your upper body strength! (lifting sibling's wheelchair into car)
2. They are learning resilience! (the countless times they had to leave parties, not go to parties, not go on vacations or otherwise "give up" normal childhood passages)
3. They are so compassionate! (which they've learned by watching their sister seize tens of thousands of times in their lifetimes)
4. They're learning tolerance! (enduring the stares of strangers in public for their entire lives)
5. They're tough as nails and fearless! (see #3)
6. Look how able he is at age three! (learns how to get into and out of a 5-point harness in a car-seat so that mother can attend to disabled older sister)
7. Your boys are so resourceful! (diminished attention at an early age from parents because they're otherwise occupied with disabled sister. See #6)
8. At least she isn't an obnoxious teenaged girl! (she's developmentally disabled and hormone swings cause hideous seizures but no discernible obnoxiousness because she can't talk)
9. You're so lucky that you can dress her in whatever YOU like. (disabled child is unable to make discerning choices and is basically stripped of all power)
10. She's made you who you are.

Taking the Lord's Name in Vain

Years ago, I used the word shit during a speech at my first wedding. Yes, I had a first marriage. I have a past, as they say. Anyway, I used the word shit, and quickly apologized, mainly because my sweet grandmother was sitting right next to me. She laughed her musical laugh, and told me in her soft, southern accent that shit didn't take the Lord's name in vain and was therefore not a curse word. All of this leads me to actually taking the Lord's name in vain because what that means -- in vain -- is what I felt right after I watched this video about disabled children in Russia.

Jesus Christ! I said, and it's definitely in vain because these things are happening every single day and no greater power seems to be in power. In fact, it's difficult to not feel cynical and powerless, to not want to retreat into a cave, close yourself off. God works in mysterious ways, be damned. What can we possibly do to alleviate all of this suffering? Yes, this particular video hit particularly hard for obvious reasons. Not only is it horrifying, but it gives me perspective on my own relatively sumptuous life, and that perspective, however hard won, has been buried under a bunch of woe of late. I've always struggled with relativity -- yes, it's all relative, but then it's not. Suffering is in degrees, if you feel it as so, and my suffering -- hell, Sophie's suffering, is relatively miniscule compared to these children and young adults in Russia in the year of our Lord 2014.

Good god almighty! Jesus Christ!

I'm taking the Lord's name in vain, over and over and over.

Oliver asked me the other day whether I believe in hell. I told him that I did believe in hell but not as a place or a time or something fixed. There is hell all around you, I told him. As there is heaven. I told him I actually believed the words of Jesus Christ when He apparently said, The kingdom of God is at hand. I believe that to mean that it's here and now, the present moment -- the kingdom of God. At hand. Here. Now. The present moment. And hell? Apparently, it's in Russia at institutions for the disabled.

Le Silence

Le Silence, Odilon Redon

Le Silence is the title of the above painting by the French artist Odilon Redon. I won't ever forget the moment I saw it, nearly thirty years ago, somewhere along the coast of France in a museum with a retrospective of his paintings. I'd never heard of Redon and still don't know much about him, but that painting made me stop and stare and has always resonated with me.

Well, I'm not going to be silent about this -- this question I've had all morning -- this thought:

A man was executed last night in the state of Texas for murder. His clemency appeal had been denied by the Supreme Court of the United States. The man had an alleged IQ of 61. He was mentally retarded. The accuracy of the IQ number was evidently in question, and the man was perhaps not as significantly mentally retarded as originally determined.

In the state of Pennsylvania, a top Republican operative made a joke to a crowd of 200 people about Obama supporters being "mentally retarded." Evidently, not a single person objected. Here's the joke: I was very embarrassed. I was in this parking lot and there was a man looking for a space to park, and I found a space for him. And I felt badly — he looked like he was sort of in distress. And I said, ‘Sir, here’s a place.’ And he said, ‘That’s a handicapped space.’ I said, ‘Oh I’m so sorry, I saw that Obama sticker and I thought you were mentally retarded."  You can read that story here.

During the last week, I've been arguing, fruitlessly, in the comment section with a man who insists on calling me a libtard. You can read a bit of that here.

What kind of state is Texas that kills a man who is mentally retarded? What kind of country do we live in that allows the death penalty when every single other western, industrialized, so-called "civilized" country has banned it?

What kind of country is this where people support an openly bigoted corporation that sells processed fried chicken sandwiches behind the mantle of "freedom of speech," defends the right to carry semi-automatic guns in the name of liberty from tyranny and kills a mentally retarded man in the dead of night and calls it justice?

Why should we be proud of ourselves?

Why are we silent? How can those of us who agree that this action is obscene -- the state-sanctioned, institutional murder of a mentally retarded man --  change it? How can we turn aside or laugh, even uncomfortably when people continue to use the mentally retarded, people like my daughter Sophie, as the basis for their jokes and criticism?

I think we need to scream:

The Scream, Edvard Munch

Jim Roddey, Pennsylvania's Allegheny County GOP Chair

info@rcac.net  Telephone: 412-458-0068
(Mr. Roddey's phone: 412-512-6747)
The Republican Committee of Allegheny County
100 Fleet Street, Suite 205
Pittsburgh, PA 15220

And I realize that it's stupid to argue with others on a conservative blog. I don't want to say I'm like a fly to shit, because that would imply I think conservative views are shit. I really don't.

Let's Talk Some More - Part 2

Defendants, Nuremberg War Crimes Tribunal, 1945

1. Whatever proportions these crimes finally assumed, it became evident to all who investigated them that they had started from small beginnings. The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude, basic in the euthanasia movement, that there is such a thing as life not worthy to be lived. This attitude in its early stages concerned itself merely with the severely and chronically sick. Gradually the sphere of those to be included in this category was enlarged to encompass the socially unproductive, the ideologically unwanted and finally all non-Germans. But it is important to realize that the infinitely small wedge-in lever from which that entire trend of mind received its impetus was the attitude toward the nonrehabilitable sick.

-- Leo Alexander, American psychiatrist, neurologist and key medical advisor at The Nuremberg Trials. Dr. Alexander wrote part of the Nuremberg Code which provides legal and ethical principles for scientific experiments on humans.



2. Ontology, the study of the
being, holds that life is a supreme good that cannot be
measured and consequently cannot be graded. On the opposite,
health can be assessed and graded. Physicians are
constantly establishing whether the health of their patient
is improving or declining. However, the value of human life
cannot be measured, and is not determined by the quality
of an individual’s life at a particular time point (23).

-- from a paper titled Transplantation and Mental Retardation: What is the Meaning of a Discrimination

3. UN Convention on the Rights of Persons with Disabilities: Article 25 - Health: States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Article 10- Right to Life: States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

United Nations' Convention on the Rights of Persons with Disabilities

United Nations' Convention on the Rights of Persons with Disabilities, 2007

If you're interested in helping out Amelia, sign the petition at Change.org HERE.

Let's Talk - Part One

In lieu of an inspired post,

I'll direct you to an article in The New York Times that strikes fear into the heart of those of us who parent and love a person with developmental disabilities.

Steel yourself.