Saturday, June 30, 2012

My Childhood Experiences of Having Public Health Care

Some of my friends didn't become disabled until they were adults. I envy their relatively healthy childhood experiences. For me, there was just a generalized sickliness from as far back as anyone can remember. I was the weak one, the underweight one, the one who had to be protected from everything. If we didn't have a public hospital in New Orleans (i.e. Charity Hospital), I'd never have reached the age of 18.

I spent many nights in the waiting room of the Emergency department, while the triage nurses juggled sick children, gunshot victims, prisoners from the local jail, and people with chronic conditions. I could never quite figure out how they decided who needed to be seen the fastest--it wasn't a matter of who would be first, because the people were always coming 24/7.

Between keeping track of who was next in a manner that wouldn't make anyone think they were ignored or looked over in favor of someone else, they had to deal with the paperwork associated with being the only hospital used by thousands of people across the state. Just getting your records brought to the Emergency department accounted for a large amount of the time you spent in the waiting room.

It wasn't exactly a free hospital. They certainly asked for your financial information. If you had Medicaid or Medicare or some kind of private insurance, then they processed that. If you didn't have any of these, they asked about your employer and whether you had any other financial resources at your disposal. Even if you were flat broke, homeless, completely destitute, you were treated just like everyone else. They did send you a bill for your care, but if you didn't pay it, nobody came to arrest you or punish you. When my parents could afford to do so, they paid the bills. After my parents divorced, my mother couldn't afford the hospital bills she received and we were just doubly thankful that we could still get care anyway.

I spent so much time in that Emergency department waiting room, that I have a lot of memories associated with Charity Hospital. Saturday and Sunday visits were only for near death problems. That was because of the frequent violence that took place in the city over the weekends. It was not unknown for people to have sat in that waiting room 16 to 20 hours on the weekend and, over my beloved grand-mère's grave, I promise you that's no exaggeration.

Weekday evenings were bad, too. People who had jobs that didn't allow them to call in sick, even for a day, went in the evenings right after they got off of work in order to have enough time to be seen before their next shift. It was almost always late at night when we arrived. If you could suffer through your problem until Monday around midnight, you'd get in and out the fastest. Near midnight, there weren't as many people arriving and the evening folks were already being processed. By that time, fresh support staff had clocked in, so they weren't lethargic from the exhaustion that must have tugged at them all toward the end of their shifts. It was years before I saw the workings of Charity during the day. Now that I've experienced both, I can compare the two, but the nights are the most memorable.

I saw the worst of what this city could do to folks: domestic violence spilling over from the outside, mothers without childcare support who had to take all of their children with them whenever one got sick, older people who were forced to come back whenever their chronic conditions became uncontrollable because they couldn't afford their maintenance medications.

The worst, though, was the listless shuffling of the homeless people who wandered in just to sleep for a few hours, before security officers forced them back onto the streets. When one set of officers would clock out and the next shift started, the same people would come back in and get a couple more precious hours of sleeping indoors. Everybody minded their own business about it. It was the strictly-enforced unspoken rule. Most people didn't see it as hurting anyone. If the homeless person was threatening or menacing, the police who filled the security jobs could have them hauled off to jail (another place where the homeless could get a few more hours of indoor sleeping). If they were delusional or nearly catatonic, they were in one of the only places where they could get treatment.

Despite this gloomy-sounding description, it was the best hospital in the state. Everyone knew this. When Methodist Hospital or Ochsner couldn't figure out what the hell was wrong with you, you came to Charity. Your socio-economic status didn't matter. Even if you had private insurance that was wonderful for primary care and specialists at the fancy hospitals, when it was your life on the line, you went to Charity.

There was no shame associated with being seen at Charity. When President Bill Clinton visited the city, security precautions necessitated that he have an emergency surgery room arranged at all times, just in case something happened. Guess what hospital they used. It wasn't Touro, Tulane, Ochsner, or Methodist. They chose Charity and it was no surprise to anyone here.

Every New Orleanian that I know had been treated there, at one time or another. They could get to the bottom of what was going on with complex cases that private doctors simply had no experience with diagnosing. I have heard innumerable accounts of the public hospital saving someone who was nearing death's door and had checked themselves out of a private hospital to be treated at Charity. Heck, they're the ones who diagnosed MY cancer and it's so rare that most oncologists will go their whole career without seeing a patient with it.

You know, I didn't really mean for this to be so long. At first, I was just going to write a few sentences on my facebook wall. Then, I figured that I might as well post it here and link to it afterward. Somehow it turned into this trip down medical memory lane. Anyway, I guess this has to stop somewhere, so this is as good a point as any. I just want to reiterate my initial point. I wouldn't have lived this long if not for public health care.

Joe Arpaio, Children Can Not Be Owned

There's something else that I noticed about Soledad O'Brien's interview with Sheriff Joe Arpaio. Listen to how he speaks about the little girl. She is not really a person. To him, she is an object. People can not be owned.

This man is the product of hundreds of years of European colonialism. Every time I see this frog-faced clown, I wish I could sit him on a lily-pad and give it one good push back toward the home of his European ancestors.

To the Sheriff Who Arrests Six Year Old Migrant Children:

Yes, it is Sheriff Arpaio. Yes, he actually has stooped to a new low. I'll likely never meet him, but if I did this is what I would tell him:

Sheriff Arpaio, you are aging rapidly. Soon, you will meet your maker. Do you remember what Jesus said? "Let the children come to me and do not hinder them" Are you following his example? I think not. When you reject these children, you're also rejecting your God. Just as you reject Him, so shall He reject you.
"Depart from me, you who are cursed, into the eternal fire prepared for the devil and his angels. For I was hungry and you gave me nothing to eat, I was thirsty and you gave me nothing to drink, I was a stranger and you did not invite me in...Truly I tell you, whatever you did not do for one of the least of these, you did not do for me." -Matthew 25: 41-45

Our New-Mom Family Tradition

Today, an academic and activist friend on Facebook shared an article about Cuarentena and New-mom traditions from around the world.

I feel really silly, because I never knew that this custom existed in "Latino" cultures. In my family, women and newborns are not allowed out of the house, except for the doctor's visit required during that period, for the first three months. There are no exceptions. Even if a beloved grandparent passed away--my aunt got in big trouble with the family for attending the funeral of my grandmother (her mom) a month after she gave birth to my cousin. Some attending folks from outside of the family just didn't understand "what the big deal was".

I was told that it comes from our Indigenous American cultures. I've never thought about researching its context. It may seem like a big inconvenience, but I do know that it does serve a few helpful purposes.

The women in our family all breast feed. Being home during that time makes it easier to do. The baby is supposed to be kept close to the mother during the whole time. There's no sleeping in another room. I think this helps with bonding, which is something that I initially had problems with because of PPD. It gives the baby's immune system time to develop before being introduced into the world.

It's also a time for skill-building. I was 18 yrs. old when I had my daughter and during that 3 months, I had my mother there to teach me all of the things I didn't know, like how to pin a cloth diaper on a baby and how to dress her without waking her up.

I hope that my daughter will carry on the tradition, if she ever has a baby.

Friday, June 29, 2012

Lupus and the Supreme Court Ruling

I also have lupus. Seeing this photo made me cry, because I understand her joy and why this ruling means that some of us will actually be able to live and work in the way that non-disabled people can take for granted. I'm allergic to the sun, but with enough frequently applied sunscreen, I can handle a few hours of it when I really need to get out and do something that can only take place outside. However, I am so often confined indoors because I'm already in the middle of a flare up that this disease severely constricts my ability to participate fully in society. I had to miss this years National Cancer Survivor's Day, even though this year marked my 10th year of surviving with incurable bone cancer (chondrosarcoma), because the event took place outside and I was already flaring up too much to be able to handle any more sun exposure.

This woman's joy mirrors my own instant burst of excitement when I heard the news. Honestly, I didn't have much hope that it would be upheld, because it's hard to believe that anything this wonderful could come from the judges on the Supreme Court right now. But it happened! It really did happen! Now my daughter has a shot at life that I never had. She doesn't have to base her every job decision and life decision around the fact that no insurance company would cover her. She can be a small business owner, if she wants to.

This decision changes our entire lives.

Thursday, June 28, 2012

To The Purists Who Don't Think That My Daughter's Life Is Enough To Celebrate:

The Supreme Court has upheld "Obamacare"/the Affordable Care Act. This morning when I woke up and logged on to the internet, I expected to see a few snide or negative comments from the handful of Republicans on my Facebook friends list. To my surprise, they hadn't said a word about it. That would have made for a great morning, if it wasn't for the fact that what I did see was several left-wing, self-identified progressives who were actually angry that the Supreme Court ruled in favor of the act. At first, I only saw about two comments like that, so I just ignored it. Then I saw a few more of them. It certainly wasn't the majority of people, but it was coming from some high-profile supposedly "progressive" activists.

The one that pissed me off the most was from Cindy Sheehan.
"Like I said before, I refuse to buy shitty, high cost death insurance from private companies. Universal, single-payer healthcare (with holistic coverage) or NOTHING. I don't have insurance today because I can't afford it..and just because Obama says that I must buy it doesn't mean I will be able to afford it tomorrow. FTS."

Sadly, the person on my friends list who shared Sheehan's comment was actually in agreement with it. This privileged Special White Woman Sheehan was an anti-war activist during President Bush's administration whose son was a soldier who died in Iraq. Ever since then, she's been held up as some sort of madonna figure in the eyes of white hipster pseudo-activists even though she didn't give a damn about the war until she lost someone in it. She's done so much white-privileged b.s. that her acolytes and admirers are now almost exclusively white.

Anyway, when I saw the Sheehan comment posted the woman on my friends list (Emma Rosenthal), I simply said that the quote was completely ignorant. Of course, Rosenthal got indignant because she considers Sheehan to be a personal friend of hers (even though she's never once commented on anything Emma has said or even acknowledged it when Rosenthal tags in a post. After I posted my comment, the white privilege got as thick as mud. I've tried to give her food for thought when I see her exhibit a lot of ignorance about people of color issues and her barely concealed transphobia. I put up with a lot of her white privilege fuckery, but today just wasn't the day for that, I guess.

She started getting really condescending and telling me not to talk to her that way when she was spewing out all of these insults directed at me, because I happen to benefit from the Affordable Care Act that she and Sheehan can afford to just dismiss. It got down to her making the really low blow of saying how the ACA wasn't going to cure my "fucking cancer". I was hurt really deep by that, but I just pointed out to her that even a single-payer health care system isn't going to cure my "fucking cancer", because there is no cure for my "fucking cancer". Then she got down to saying that well, she's talked to people of color who don't like the ACA either. After telling her that she doesn't speak for those people, she started using the tone argument and I posted a link to the Derailing for Dummies site. Of course, she became indignant about the ablism in that title, but she had nothing to say about the ablism involved in Sheehan's call for universal health care or "NOTHING".

She de-friended me.

I'm not going to lie. It really hurt me.

I'm the third generation in my family to develop cancer. My grandfather died of it. My mother barely survived it. Several of her siblings have it and I'm still living with it. My doctors have talked to me about how seriously I need to take my family history. Because of our family history, and my relatively young age when my tumor developed, the doctors place my daughter in the category of those who need to screened regularly, even though she's much younger than the usual age when it's recommended.

Can't anyone see how much I had riding on this decision?! Can't everyone see? After all of my life-long struggles to get healthcare, because I've had "pre-existing conditions" my entire life, I was finally able to get Medicare. However, I only got it after several appeals and only because I was considered terminally ill. My daughter isn't sick enough to qualify for it. She's able to get Medicaid, because she's my dependent. However, she's 16 and will soon age out of her eligibility. So what are we to do then?

My partner is working towards a career where he'll be able to get health insurance and hopefully he'll be able to put her on it. However, being able to still get free community cancer screenings in the meanwhile will at least make it possible for us to know if she develops it. If the Supreme Court ruling had excluded any part of the health care act, then we'd be facing a hopeless situation.

My partner is only a little less disabled than I am. Please don't say what you're thinking. I already know. I've been told that I maybe should have partnered with someone who isn't disabled. Well, he wasn't disabled when I met him and even if he was, he's the only person who was willing to love me without reserve. My college sweetheart bailed when I got the lupus diagnosis.

But my current partner is able to work, it looks like his old employer is going to take him back. He worked for FedEx and that was how he wound up with a traumatic brain injury from a dog attack. They're looking for a position for him where he doesn't have to be a driver. FedEx has GREAT health insurance. I mean gold standard health insurance. If my daughter could get on his insurance, our problem would be basically solved. And it's almost within reach.

This ruling changes everything for us. EVERYTHING. The removal of the preexisting condition clause (and the Supreme Court upholding it) means that my daughter could get healthcare through an employer, when she grows up. Before this, she had no shot at ever getting health insurance--not with her family history and her own ADHD and Sickle Cell trait. We've never been able to get a company to insure her, because they could just refuse her.

Damn it! I'm so very angry that someone that I thought was truly an ally just chewed me out and belittled my struggles and couldn't even be happy for my kid for one damn morning. Just one damn morning.

Thursday, June 14, 2012

Comprehensive Prenatal Testing Does NOT Cause Abortions

This article on LifeSiteNews is ridiculous. It's a perfect example of one of the reasons why I wish that most journalists would just avoid writing about scientific discoveries. The article is about a newly developed prenatal test that may make it possible for doctors to tell parents if their unborn child might be likely to develop a certain kinds of medical conditions later on in life or if the unborn might have a congenital medical issue.

As a woman with disabilities raising a daughter with disabilities, I think it is wonderful for women to be able to have advance knowledge about their babies. Just as the vast, vast majority of women who find out the sex of their child don't have abortions based on what they find out, it's ridiculous to think that the vast majority of women will decide to have an abortion just because they will know more about their developing baby.

A test letting women know if their child possesses certain conditions allows them to prepare for what they will need to do once the baby is delivered. If you're worried that knowledge is sooo very scary, then set up counseling for women who find out they are pregnant with a child with disabilities. Instead of just gnashing your teeth and throwing ashes on your face, you can actually make this into something that benefits women who are currently ignored by many self-identified "pro-life" people.

My daughter hopes that any child she has will have some sort of disability. Why? Because she knows that variety is the spice of life and having disabilities allows one to be a part of disability culture (another ignored group).

The idea that most women would abort if they find out their growing baby has a condition assumes that most women have no desire to keep their baby if she/he has what you see as a defect or disorder. The fact that many children with disorders are aborted should shame those in the "pro-life" camp. The time and effort spent whining about women receiving more information could be used to help mothers prepare for the challenges of raising children with disabilities. Studies have shown that parents who receive such counseling are much more likely to continue pregnancies like this.

Sunday, June 03, 2012

Meditation on Medicare: Making the Case for My Life

Today is a day of so many emotions. I don't know how in the world to describe every aspect of it. However, I know that there was something that I needed to say today. What I'm trying to do here is make the case for why society should make sure that Medicare stays available for for Americans.

It is incredibly hard to live in fear, real bone-chilling fear, that even with a cancer that has been manageable for nearly 10 years, it might not be enough. If the government withdrew Medicare, I could never afford to see the coordinating set of specialists who have--to every one's surprise--been able to keep me alive this long.

I'm not above begging for my life. I LOVE living. And maybe keeping me alive could help others, too. My case has been studied all around the USA. My cancer is so rare that there are only about 600 known cases of it in the world. If doctors and researchers can figure out how to deal with complex cases like mine, then it will be much easier for others in the future who find themselves facing a lupus or cancer diagnosis.

Screw it all! I'll be America's guinea pig. It sure as hell beats being dead. I gladly participate in the long shot strategies. Maybe when you need it, it won't be so risky, because they'll have figured out how to perfect it by trying it on people like me.

If society keeps me alive, I'll do my part to return the favor. Please y'all, please remember to fight for Medicare and Medicaid as this society tries to move toward a more humane system of care for everyone.

My TENTH Anniversary of National Cancer Survivors Day

TODAY IS NATIONAL CANCER SURVIVORS DAY. It's one of the most important days of the year, for me. I simply can't believe that I can now say that I have lived for ten years with bone cancer. How can it be true? I have persevered. I have learned to live with cancer instead of despite cancer.

There are so many things that I want to say, but I am verklempt. I feel so very thankful and unworthy and blessed and...I just think that I'm going to have to wait a few days to try to process this thick swirl of emotions that feel. Today I am alive and that, alone, is more than I have ever had reason to believe I'd be able to say ten years later.