Wednesday, September 30, 2009

Why HIV/AIDS in America is a Black Disease

CarlosQC from the Two Spirits One blog just posted an interview he had with Phill Wilson, founder and Executive Director of the Black AIDS Institute. As Wilson points out in the interview, "The Black AIDS Institute is the only National HIV/AIDS think tank...that focuses exclusively on black people". In the interview, Wilson talks about the HIV/AIDS statistics among black community.
Black people represent roughly 12% of the population and yet we represent nearly 50% of the estimated 1.2 million Americans with AIDS. We represent nearly 50% of the annual HIV/AIDS deaths. We represent nearly 50% of the new HIV/AIDS cases in this country. We're 30% of the cases among gay men. Black people are 40% of the cases among men, over 2/3 of the cases among women. We're 63% of the new cases among infants in pediatrics and we're 70% of the new cases among adolescents.
I wish there was a transcript of the interview, which is ten minutes long, because it is about a disability issue and it would be nice if people who are deaf/hard of hearing could have access to it, too. Still, if you can listen to it, it's definitely worth watching.

Republican Candidate Chris Christie Advocates Health Care Rationing

I wish I could have been there to hear this stupid man talk.

"The exception is for people to have cancer in their twenties. That is an exception"

Uh, what? Excuse me? Where the hell has this man been hiding? This man is proof that knowing someone with cancer doesn't make you an expert on health care issues. Chris Christie is arguing that insurance companies shouldn't be forced to pay for mammograms for women. According to Christie, since people in their twenties don't have cancer, they don't need their insurance company to pay for mammograms. Does that make sense to you? If it does, then I suppose I should break this down for you.

If a woman is in her early twenties, she may still be covered by her parent's health insurance. Some health insurance companies allow people to remain dependents on their parent's plan if they are under 25 and in college. Perhaps she was smart enough and wealthy enough to purchase insurance on her own (while she was still healthy) after she no longer qualified as a dependent. Perhaps she has a full-time job and receives health insurance through her employer. There are all sorts of ways where a woman in her twenties could end up in the situation where she needs to have a mammogram covered by the insurance that someone is paying for.

Now, what do you think happens if her insurance company won't pay for the care she needs? She'll be forced into a situation where she may have to pay for those tests or treatments and continue paying for the insurance that was supposed to provide her with coverage. If she can't afford to do both, what do you suppose happens next? Why would she continue to pay for something and get nothing in return? If she drops that insurance company and still requires care, who do you think will have to pay for it? Here's a hint: You!

The idea that people having cancer in their twenties is an exception is absolutely laughable. I and many, many others I know experienced just that. In fact, there are thousands of people in the USA who are diagnosed with cancer even younger than that. If insurance companies are allowed to deny treatment based on the age of the patient, then that is rationing and it's hypocritical for politicians to rant and rave about the possibility of government rationing when they are openly advocating for insurance companies to be allowed to continue doing just it.

You know what, though? I'm glad to hear him making these ignorant comments. I think that people with disabilities deserve to know what these candidates think before we go to the polls. If they can get elected without proving that they have a educated position about disability and health care issues, then what impetus is there for paying attention to us once they are in office? We need to be like the woman in this video and speak up when our voices are most powerful.

Thursday, September 24, 2009

Our Lady of Africa

Do you ever wake up with a particular phrase on your mind and then have it stick with you the whole day? This morning, I woke up thinking about Notre Dame D'Afrique, Our Lady of Africa. I have a special fondness for her. I've been thinking about the words that can be found on the wall inside of the church in Algeria that bears her name.

"Notre Dame D'Afrique, priez pour nous et pour les Musulmans."

It means, "Our Lady of Africa, pray for us and for the Muslims." I can't quite figure out why this has been in my head all day--I'm not even Catholic--but I must have repeated it dozens of times already. I wonder if it's something that's in my head for a reason or is it just some thought randomly pulled from the recesses of my mind. I'd rather believe it's the former, but I still haven't figured out why it's there and why I can't stop thinking about it today.

"Notre Dame D'Afrique, priez pour nous et pour les Musulmans."

Life in Four Bottles

Photo Description:There are three bottles on top of cloth-covered table. From left to right, the first one is a baby's bottle. The second one is an old-fashioned Coca-Cola bottle. The last one is a beer bottle. Directly to the right of the three bottles, there is an IV-stand with a bag of fluid hanging from it.

Someone sent this picture to me today, via e-mail. It was titled, "Life in Four Bottles". Underneath the picture, they typed "Damn! I'm already on the third one!" It made me giggle a little bit as I thought about how I've "cheated death". Well, no one really cheats death, because it always comes along eventually. Still, I do know that I've lived a lot longer than many people thought I would or could. Hell, even I didn't know I'd still be here enjoying my life in 2009.

That picture made me feel triumphant. I've been through all of the life stages that those bottles are supposed to represent. I've experienced all of it and I'm still around. I'm past those four bottles. I've faced most of the challenges that are associated with each of these phases and they don't scare me like they once did. I'm at the point where I'm eager to see what lies ahead.

Today I feel like the future is wide open. I float freely between all of these phases almost simultaneously. No bottle can contain my spirit. I am free to enjoy them all without worrying what comes next.

Wednesday, September 23, 2009

What's so Hard About Inclusion?

via Asperger Square 8 along with a hat tip to CripChick

Okay, this is the best video about disability that I've seen in months. It's a little less than three minutes long, so if you only have a little time to spend visiting this blog, skip the other posts and watch this video. It captures so much of what people with disabilities go through on a daily basis. It's called "Top Shelf". Watch this. It may change your life and, if you let it, it could make life a whole lot easier for me and my people. Let me know what you think after you watch it.

Saturday, September 19, 2009

Hoist the Colours! It's National Talk Like a Pirate Day!

VanGoghGirl's Pirate Figurines

Tia Dalma
Captain Hook
Captain Hector Barbossa
Jack Sparrow & Davy Jones

Arghh ye scurvy rats listening? It's that time o' year again. Here's a few scenes from one of the best movies of all times (Pirates of the Caribbean) and it's totally arghhwesome "Hoist the Colours" song.

The king and his men,
Stole the Queen from her bed,
And bound her in her Bones,
The seas be ours,
And by the powers,
Where we will, we'll roam.

Yo Ho, haul together,
Hoist the colours high,
Heave Ho, Thieves and Beggars,
Never Shall We Die!

Some men have died,
And some are alive,
And others sail on the sea,
With the keys to the cage...
And the Devil to pay,
We lay to Fiddler's Green!

The Bell has been raised,
From it's watery grave...
Do you hear it's sepulchral tone?
We are a call to all,
Pay heed the squall,
And turn your sail toward home!

Yo Ho haul, together,
Hoist the colours high
Heave Ho, Thieves and Beggars,
Never Shall We Die!

Arrr you ready for more pirate anthems?

Thursday, September 17, 2009

Top Ten Reasons Hurricane Season is Just Like Christmas

My ex-mother-in-law sent this to me via e-mail. I thought it was kinda cute and since it's still hurricane season and Christmas will be here before we know it, I decided to share it here.

Top Ten Reasons Hurricane Season Is Like Christmas

Number Ten: Decorating the house (with plywood).

Number Nine: Dragging out boxes that haven't been used since last season.

Number Eight: Last minute shopping in crowded stores.

Number Seven: Regular TV shows pre-empted for 'Specials'.

Number Six: Family coming to stay with you.

Number Five: Family and friends from out of state calling you.

Number Four: Buying food you don't normally buy . . . and in large quantities.

Number Three: Days off from work.

Number Two: Candles.

And the Number One reason Hurricane Season is like Christmas:

At some point you're probably going to have a tree in your house!

Wednesday, September 16, 2009

This Blog Is A No Cookie Zone

Today, VanGoghGirl and I had a conversation about privilege, oppression and intersectionality and how we are all capable and guilty of engaging in oppressive behaviors. I was motivated to talk to her about this after reading a few different perspectives on this over the past few days. One of the things we discussed was why it's unreasonable to expect to be praised every time we do something that we're supposed to do.

We discussed a few examples, like how society isn't doing me any favors when they make public spaces accessible to people with disabilities; it's simply doing what it has a responsibility to do. Lately we've been seeing a commercial on television featuring Hillary Duff (working for the ThinkB4YouSpeak campaign) speaking out against homophobic statements. I was telling her that I think it's really great that Duff was doing this, because she's someone that folks my daughter's age might be more likely to listen to than if the same message came from someone much older. Nevertheless, I explained to her that we all have a responsibility to speak up when we hear people talking like that.

Thankfully, my daughter has always been really good about that and I try to praise her efforts. However, she's getting older now and I don't want her to go out into the world as an adult and have a chip on her shoulder if no one gives her a pat on the back just because she doesn't actively try to oppress others. I talked to her about some of what I've seen on the blogosphere where people think that their good deeds entitle them to say and do anything else they want.

After this conversation, she helped me--Okay, actually, she did almost all of the work--make this little badge to put on my blog. I've decided that I'm declaring My Private Casbah to be a No Cookie Zone. In the past, I've dealt with folks who think that their affiliations with individuals or groups or organizations should be applauded and rewarded. It's really annoying and I've had enough. The next time someone comes here with that crap, I can just point to this picture and leave it at that.

LGBT Center Awareness Day

(Hat tip to Queers United)

I wish I had seen this earlier. Yesterday was LGBT Center Awareness Day. On my old university campus, we had a little one room center that was like an oasis we could retreat to whenever we needed healing and support and community. I spent numerous afternoons just hanging out there, doing my homework or hanging out with my daughter. It was one of the few identity-affirming spaces on campus and I'm glad that I had access to it and benefited from what it had to offer.

Saturday, September 12, 2009

Actors Speak Out About Health Reform

Two actors who star in the hit comedy series, "Scrubs", talk about the very real need for health insurance reform in the United States.

Friday, September 11, 2009

My Caretaker, My Partner

I've lived with cancer for over seven years. My partner (The German) has been through all of the ups and downs that several of the caregivers mentioned in this Feministe thread. I was blessed to have someone who was willing to devote every waking moment to making sure that I was as comfortable as possible, given the circumstances. I never went to a doctor's appointment or radiation treatment where he wasn't right there with me or right on the other side of the door, waiting to help me back into my clothes and get me safely back home.

When I was hospitalized, he spent every night with me, watching over me, making sure that pillows stayed at the right angle and keeping track of who came and went and what they did to me. He arranged for our daughter to be brought to the hospital, so that I could see her. He gave me a sponge bath. He combed my hair and brushed my teeth and applied my lip-gloss for me, because I wanted to look like the mom that she was used to seeing. Other people might have told me that I shouldn't worry about my hair or make-up at a time like that, but my partner knew me. He understood what those things represented to me, so he did it, even though I know that he couldn't care less about make-up and hairstyles.

He cared about me. No, those aren't the right words. He adored me. He adored me before the cancer and our love has only increased over the years. I don't think that anyone on Earth could have a more devoted partner than the one that I have here. I have never asked him to do something that I needed and had him refuse my request. Never. No matter how much care I needed, he provided it without complaint.

That sounds lovely, doesn't it? However, even our devotion to and love for each other wasn't enough to protect us from certain realities. As can be expected, my body has been permanently altered by the rounds of surgery and treatment it has sustained over the years. From the beginning of my cancer journey, we knew that surviving cancer didn't mean I'd ever be able to use my body in the same ways that I was accustomed to. The part we didn't immediately understand was how it would affect his body.

The German is a strapping, 6'4" tall Louisiana man. When I was diagnosed, we were both in our early twenties. We both worked to pay our bills and take care of our daughter. When I became unable to work, the full financial burden fell on him. Any moment when he wasn't caring for me was spent at work, keeping a roof over our heads. This wasn't just a situation that lasted for a few months; this was our reality for several years.

After a short time, it became clear that it was taking a huge toll on his body. He wouldn't go to bed; he'd simply pass out from exhaustion from time to time. His diet consisted of whatever he had the energy to scarf down in between caring for me. Picking me up and carrying me from one part of our flat to another might be considered physical exertion, but it didn't compare to the amount of exercise we got when we used to go rollerblading and walking several times a week.

Things are a little better now. I can walk most of the time, so he doesn't have to carry me as much. I've (mostly) regained the use of my left arm. These things allow me to be a lot more independent, even though I still have the cancer in my chest. I love being able to use the toilet or take a shower without needing assistance before, during, and afterward.

However, my partner has maintained many of the habits that he developed when I was incapacitated. He still cooks all of our meals and does all of the driving. I've tried to get him to venture out a bit and make some new friends, but I've been utterly unsuccessful. After years of being at home, taking care of the finances, the cleaning, the cooking, and the majority of the parenting, I'm not sure he'd know how to develop new relationships. This makes me extremely sad, because he deserves to have a life that doesn't constantly revolve around the needs of someone else. He's a great guy and everyone in my family and all of my friends who know him seem to think so, too. He has a wicked sense of humor and he's the smartest guy I've ever befriended or dated (When his IQ was tested, he scored in the Very Superior range).

When I got diagnosed, we talked a lot about how our relationship might change. There were significant periods of time where we couldn't have sex. Even though there were things that we could physically do together, he wasn't comfortable with initiating sex because he couldn't stand the idea that anything he did might add to my physical pain and he had strong feelings about the ethics of doing this, knowing that I was heavily narcotized all of the time. Even though I was sure I could help him get over that first concern, I don't think I could ever ask him to do something that violated his principles.

In the past year, I've made a couple of friends who live in the city. One of them has lupus, too, so it's been really awesome having her near enough for me to visit a couple of times. Her partner is as sweet as can be, so it's kind of like a package deal and what's not to love about that?! My partner has chauffeured me to their house and many other places that I wanted to go. He drives our daughter from to and from everywhere a busy and, apparently, popular teenager needs to go.

I don't think I really have a complaint here; it's more of a concern. I appreciate how devoted he is to the family unit that we have created and shared for close to a decade now. We have a closer relationship with our daughter than any other of her friends seem to have with their parents. I never have to worry about him blowing all of the rent money at a bar or casino (Since we've been together, I could count on one hand the number of times he's even had a single beer and he doesn't gamble). My daughter has never had to deal with watching her dad yell or engage in any other threatening behavior. We know when he's really angry, because he gets really, really quiet.

Some people might not see anything wrong with this picture, but I worry that there is. See, I think that everyone needs a way to get out some of their aggression. I mean, is it really healthy for someone to never raise their voice or just beat up a pillow or two? Maybe there are some people whose personality makes them perfect caretakers, but I suspect that they are few in number. What about those who do not have the wherewithal to be happy with a life like the one my partner has?

Thursday, September 03, 2009

Why I Support Immigration Reform in the U.S.A.

I support immigration reform because people who contribute to society (Many immigrants do some of the most back-breaking work that you could even imagine, simply to scrape by economically) deserve all the same benefits as those who just happen to be born here.