56 Million People with Disabilities Live in the United States

Sophie, 2007

I know I read somewhere that this year's election is costing something like 10 gazillion dollars -- all money that goes toward television ads, giant billboards, staffing, plane rides, dinner parties and barbecues and vote-buying, I imagine. Or influence-buying or whatever. And yeah, I know that some of that influence peddling is for causes that I support and believe in. But, whenever I hear the numbers -- from whatever side -- I feel nauseous for obvious reasons that I'm not going to talk about here. When the DNC calls me on the phone, asking for money, I hang up. I have donated absolutely nothing this year to the Obama campaign, NOT because I don't want him to win the election, but rather because I'm making, albeit ineffectually, a tiny little protest about the obscene amounts of money thrown around. I want to be able to say, in my heart, that I haven't contributed to the oligarchy -- at least in any meaningful way.

Allow me to be a bit narrow-minded in this space and pluck one issue out of the ether -- the issue of disability -- and judge the candidates running for President.

Mitt Romney and Paul Ryan's economic and social platforms, particularly Ryan's Medicaid plan, spell disaster for children and adults with disabilities. Nearly every major disability policy expert, as well as non-profit foundation censures the Ryan plan.  I don't pretend to understand the complexities, although when I hear the word "voucher," I imagine myself shopping for healthcare for Sophie in the "free market" which makes me think about poking my eyeballs out with ice-picks. You can read about them (not my eyeballs -- the Ryan Plan and what it means for the disabled) HERE  and HERE.

“For each of the two years that Paul Ryan has been chair of the House budget committee, he’s produced budgets that we’ve opposed,” said Katy Neas, senior vice president for government relations at Easter Seals. “The pick of Paul Ryan gives people another opportunity to look at the policies that he and the other candidates have proposed.”

The website disabilityscoop.com  has good discussions about disability and politics, if you want to explore the issue further.

President Obama recently met with a group of youth with disabilities to discuss the needs of the community. While there was no one there with a severe disability, like Sophie, the issues addressed -- unemployment, inequality, access, inclusion, healthcare and medication -- were met by the President with seeming sincerity and seriousness. Aside from the Affordable Care Act, which is far from ideal but makes inroads for those with disabilities, it remains to be seen what progress will be made. Something tells me that true awareness and empathy for the most vulnerable in our country is a great step forward.



I'm waiting anxiously as are 56 million others in this great country.

A Morning Anthem

I got an email from Anthem Blue Cross this morning that looked like this:

Your Healthy Solutions Newsletter Has Arrived!


It was the exclamation point at the end, all the cheerfulness inherent in the teardrop and pinprick that got to me, and on a day where I'm hard up to find inspiration for writing (the weather, again? Sophie's seizures, again?, the Transit of Venus, again? the arguments between my sons on whether or not they'd seen the transit because aren't you blinded, Mom, if you look at the sun?), well, caustic words toward Anthem might be just the thing.

I think it would be downright refreshing if Anthem Blue Cross would change their marketing and advertising communication techniques and just be honest. At the very least, I would get a laugh and at the most feel a grudging respect for honesty were that subject line in my email to look like this:

We're Busy, Working Hard to Ensure That We Screw You With Increased Rates!


Or maybe something like this:

Our Intent is Not To Give You As Much Stress As Your Daughter's Seizures, But To Make As Much Money As We Possibly Can!


Or maybe something like this:

If the Supreme Court and Republicans Overturn the Affordable Care Act, We're Ready to Really Fuck You Over, So Be Prepared and Get Healthy!


Or maybe even this:

We Look Forward to Continuing Our Long-Standing Relationship of Coming Between You and Your Doctor On All Matters Related To Your Health!


Reader, if you'd like to join me in this campaign for honesty in advertising and marketing, please feel free to leave a comment. Curse words are welcome. Heck, you can even curse me! And don't forget the exclamation point!

Re-post, two years later

I posted this a couple of years ago and titled it "What I Want to Say to the Health Insurance Industry and Those Who Fought Against Healthcare Reform" -- well, here we are and here I still am, fighting the powers-that-be with that medication business I told you about a few days ago. I can only imagine what crap the Supreme Court is listening to at this moment. Yeah, we had healthcare reform and yeah, I still support it, but yeah, it didn't go far enough and yeah, the Republicans are fighting tooth and nail to get the whole thing repealed and then they claim they're going to start over which sounds to me like they prefer the status quo which would include placating the Catholic bishops and all that folderall about religious freedom and let the markets go free, which means the insurance companies which, similar to the Catholic Church, have a history of if not literally, then figuratively raping -- well, maybe I better just shut up and roll over, here on the first day of spring.

Thinking about

1. this:

I will not tell families that have children with disabilities that they have to fend for themselves.

Barack Obama

March 13, 2011

because it's about time and because it renews my hope that Obama and our country will do the right thing and because I was losing hope if not completely than nearly completely, particularly in regard to Obama. And I'm perfectly aware that this is entirely dependent on endless negotiations that will perhaps be fruitless, but I'm hoping it's not all talk --

2. and this:

the person on my Facebook page who brought up the birther -- what do I call it? -- shitstorm as a response to the above quote that I'd posted, stating that Obama has spent millions of dollars on lawyers to hide his birth certificate instead of giving it to organizations that help children with disabilities. I'm not going to think about it for too long, except in the context of how insensitive and ignorant the comment was and how it underlies a greater ignorance in our country and perhaps our world and how grateful I am to have the opportunity, the education, the smarts and the sensitivity to dispel ignorance about disability in general.

2. and this:

If you ban it, they will read it. That seems to be true thus far in the case of Sr. Elizabeth Johnson’s 2007 book Quest for the Living God: Mapping Frontiers in the Theology of God, which the United States Conference of Catholic Bishops suggested should be banned from Catholic schools in a statement on March 24.

Read more HERE.


3. and the blog NERD BOYFRIEND because it's not all about strife and conflict

on the Repealing the Job-Killing Health Care Law Act (that's really what they're calling it!)

Mollis, Switzerland

And it's not about the money. As I tried to explain in my last column, the modern G.O.P. has been taken over by an ideology in which the suffering of the unfortunate isn't a proper concern of government, and alleviating that suffering at taxpayer expense is immoral, never mind how little it costs.


Paul Krugman, from today's Op-Ed column in The New York Times

Yet Rappaz looks puzzled when asked about people in the United States who say that it would be intrusive to mandate health insurance.

"I'm not sure that I get you," she says, cocking her head.

When the question is put another way, she laughs. "Oh, I see. That's really an American question. You are so used to having this individualistic way of thinking, and that's why you don't have these social [safety] nets. You still have this pioneer mentality where everyone has to take care of themselves."

That's not how people in Switzerland think about it, she says. That pioneer mentality, "is good for people who have no problems, but there are a bunch of people who ... need a social net.

"I'm really happy to give part of my salary to a solidarity system," she says.


Cecile Crettol-Rappaz, a Swiss citizen, speaking in response to questions regarding the cost of helping those in need.



The way the Swiss government approaches this is that every person who is a Swiss citizen has the right to be able to live decently.


Ellen Wallace, a Swiss citizen speaking about the insurance program that guarantees her disabled child will be covered for life.

Both of these quotes were taken from two interviews a couple of years ago when the United States was in the beginning throes of healthcare reform. You can read more  HERE and HERE.

The idea that we have to go through all of this again, especially given the title of the new bill (Repealing the Job-Killing Health Care Law Act) is offensive to me and has nothing to do with democracy. If not immoral, it's plain stupid. I just don't understand why we can't expend energy on making the bill more fair, more equitable, etc. and not on repeal.

Did I mention that The Husband is Swiss?

On Politicians and Health Insurers

As the drug made from blood product drips slowly into my daughter's veins this morning, I am struck by the irony of the article I am reading in the Los Angeles Times newspaper, an article with the title: HEALTH LOBBY SPENDS HEAVILY ON GOP. In a nutshell, the article describes the fantastic amounts of money being poured into Republican coffers as we speak, as the drug drips slowly into my daughter's veins, by the insurance companies, those bastions of health and service and morality whose lobbying efforts are the real movers and shakers in this "healthcare reform debate." I'm reading of their initial interest in the healthcare reform act, of how they poured money into Democratic leaders' coffers when they realized how much they stood to benefit should tens of millions of uninsured people be compelled to purchase insurance. But now the tide has turned. They are chafing at the new bits imposed. "The health reform law did not deliver the uninsured in the way that insurers wanted," says one veteran healthcare analyst. "Some insurers have said recently that they will stop selling some policies rather than comply with the mandate to cover sick children."

Do you want to feel sick? Read this article -- although I imagine most of you suspected it all, anyway. I'm reading it as the drug drips into my child's veins, and it's making my own blood boil. I'm going to let it boil, but I'm also going to use this anger productively and vote, stay engaged, fight for healthcare reform. There's a part of me that feels as if it's a losing cause -- that our country has totally succumbed to the evils of corporatism and big money -- the military/pharmaceutical/industrial complex - and who am I to go against these Goliaths? I am admonished by my conservative friends, by my conservative relatives. I feel pressure to be more "moderate" -- to lessen my own "rhetoric" and see to understand "the other side." 

You know what? I'm reading a little book right now for my training fellowship called The Seven Habits of Highly Effective People. It's not really my cup of tea as it combines self-help with business principles, but what I read last night resonates with me this morning. There is an exercise the author recommends -- imagine your end, he says, imagine knowing when your end, your death might be. 

Here's how I'm using that today:

If I were to die tomorrow, I'd want to be on THIS side and not theirs -- the Republicans and the Insurance Industry. They make my blood boil, and they make me sick.