Saturday, August 30, 2008
It's hard to believe we might be facing another Katrina-like hurricane so soon after the last one. We still haven't recovered from it all. My mom and dad are still fighting with the insurance company that has refused to pay out for the damage from Katrina. I could easily name over a dozen other folks in the same situation. If another hurricane hits, this will complicate things because a lot of homeowner claims are still winding through the courts as people seek some kind of justice. Will the courts make the insurance companies pay extra if the owners that are still awaiting money in order to finish their repairs from Katrina receive even more damage from Gustav? Somehow, I doubt it.
Friday, August 29, 2008
My family members are all deciding where everyone will go if this hurricane does come to town.
Sunday, August 24, 2008
At the same time, I don't think that not being picked to be his running-mate will ruin Clinton's ability to run again. She's extremely intelligent and fairly young. Lots of people go on to run again even though they weren't nominated the first time they tried. I refuse to believe that she needs some man (e.g. Obama) to rescue her from failure. The idea that a woman should wait around to be picked by some man is as anti-feminist as I can imagine and it's certainly nothing that I'd hope Clinton would settle for. She has plenty of other things she can devote her talents to.
Furthermore, Clinton chose to put those millions of dollars into her campaign. The woman is a multi-millionaire. You don't get that kind of wealth without being financially savvy enough to know how much you can afford to invest in something where you could potentially lose it all. In other words, she obviously felt like the possibility of losing that money was worth the potential pay-off from her investment (i.e. winning the nomination and, eventually, the presidency). The money that she spent hasn't put a dent in the lifestyle that she enjoys. It hasn't bankrupted her or her family. And guess what? She's going to go on to make even more millions of dollars in the future. So, please people, stop getting all upset that Obama didn't rescue her from her debt, too.
This damsel-in-distress thing just becomes more clichéd every single day.
Saturday, August 23, 2008
In the comments of another post that I wrote a few days ago, a few people questioned the idea that Elizabeth Edwards’ cancer is incurable but not terminal. Different authorities were cited and used as the basis for how the commenters defined what conditions should rightly be called “terminal”. Some appealed to legal definitions of it. Others saw doctors as the experts on this topic. Really, this is nothing new. It’s an issue that PWD (people with disabilities) have been speaking out about for many, many years.
Why is it those who do not have the condition are considered the experts on how it should be viewed? Sure, I can accept the fact that doctors are experts on how to treat diseases like cancer. However, does that make them qualified to determine how diseases should be viewed? I’m not so sure about that. Instead, I wish people would consider the fact that PWD are perfectly capable of deciding how they should view what’s going on with their body. It’s more than a little bit paternalistic to try to make that decision for us.
It seems that non-disabled people sometimes have a hard time understanding that disability is cultural, not medical. What is seen as a terminal illness to some certainly isn’t to others. For example, let’s say the average lifespan for an individual in a particular place is 50 years old and the patient is already 50 years old, should we call a disease that is likely to kill them within ten years one “chronic” or “terminal”? After all, we all die of something. Should we call whatever might kill us (e.g. diabetes, pneumonia) “terminal”? Why are the lives of people with cancers like the ones Elizabeth Edwards and I have described as terminal when others are not even though they may all result in death eventually.
The truth is, there’s a whole lot of room between incurable and terminal and that gap is only widening as I’ve experienced first hand. For many people, cancer is quite manageable even when no cure can be expected. Because so much of medicine is focused on curing people, when a patient has conditions that can’t be wiped out, it’s often viewed as a failure. However, there’s no reason why our lives should be measured according to the lives of others for several reasons. What’s considered a normal lifespan has varied through the ages and still varies throughout the earth. But who decides what’s normal? In an ablist system, what’s normal will almost always be defined as that which meets up with non-disabled people’s lives.
Lately, I’ve been doing a lot of thinking about bodily autonomy. It seems to me that when feminists discuss this issue it is usually with regards to reproductive justice. However, I’ve got something different in mind right now and I’m hoping that others could give me some input on it.
As a member of disability culture, I have witnessed how those within my community are particularly susceptible to having our wishes ignored even when we are able to express ourselves quite clearly. I’m not just referring to those situations that happen during our day to day lives. It’s really aggravating to hear about how often non-disabled people feel free to just grab someone’s wheelchair and move it without even asking for permission from the person sitting in the chair. Things much worse than this occur inside of hospitals all the time. Medical professionals sometimes exhibit the same ablism I’ve witnessed in public. Given this environment, I’m loathe to say that doctors should be given permission to over-ride a patient’s stated will. However, I am beginning to think that my view may need to be reassessed.
When it comes to abortion, my feeling is that teenagers want them should be able to have them. I don’t think we need the state deciding whether or not a person should continue a pregnancy. For me, it’s really cut and dry. However, should this apply to all medical decisions that a teenager wants to make?
What about the issue of blood transfusions? If you live in the United States, chances are you’ve had Jehovah’s Witnesses knock on your door at some point trying to preach their brand of religion. Three of them knocked on my door today. There are a few people in my family who are members and over the years many of them have attempted (unsuccessfully) to get me to join their ranks, so I’m fairly familiar with their beliefs.
Jehovah’s Witnesses vary from the majority of Bible-based faiths in several ways that cause many to see them as a non-Christian religion. However, none of that really matters to me. After all, Christianity comes in so many flavors that we could go on and on about what is and isn’t truly Christian. What interests me is one of their more unusual of beliefs having to do with blood transfusions.
Those who have been baptized into the faith are forbidden to receive blood transfusions, even in the case of a medical emergency. On their website, the official position is explained here:
Is it wrong to accept a blood transfusion? Remember, Jehovah requires that we abstain from blood. This means that we must not take into our bodies in any way at all other people’s blood or even our own blood that has been stored. (Acts 21:25) So true Christians will not accept a blood transfusion. They will accept other kinds of medical treatment, such as transfusion of nonblood products. They want to live, but they will not try to save their life by breaking God’s laws.—Matthew 16:25.
Now, if an adult decides that they want to live according to the tenets of that faith and they are willing to deal with whatever physical consequences there will be as a result of their refusal, then I see no reason for me to butt in at all. But what about when the person in need of treatment is a child or a young teenager?
Oftentimes, children are pushed to get baptized, sometimes before they are even teenagers. Regardless of their age at the time, once they are baptized, they are expected to abide by all of the same rules and prohibitions that apply to adult members. This means that they are required to resist any attempts to give them blood transfusions and if they do willingly receive blood, then they are often excommunicated/shunned/disfellowshipped from the congregation of believers.
This disfellowshipping goes beyond the Catholic version of excommunication where you are no longer considered qualified to partake of the consecrated Eucharist or have a wedding officiated by a minister of the church. Jehovah’s Witness ministers announce the person’s excommunication from the pulpit in front of the entire congregation, so there’s also a public humiliation factor involved in this. As a Jehovah’s Witness, being disfellowshipped means that members are not allowed to have any dealings with you, this includes those who may be a part of your family and even reside in the same home as you do. According to the religion, other Jehovah’s Witnesses are required to refrain from even speaking to you and they can also be disfellowshipped if they knowingly disobey this edict. They are instructed not to even sit at the same table and eat a meal with the excommunicated member.
What this means for teens in Jehovah’s Witness families is that there is a very heavy price to pay if they want to go against the demands of their religion, even if their intention is simply the preservation of their own life. The religion is so insular that such “disobedience” often leaves the person cut off from every close relationship they’ve been allowed to cultivate throughout their life. Youths are not allowed to develop friendships with non-members so disfellowhipping means that none of your friends are allowed to communicate with you in any way. When I was a teenager, I didn’t exactly want to talk to my family and friends about everything going on in my life but I can’t imagine what I’d have done if they had been forbidden to speak to or be around me even when I did want to turn to them for advice.
Okay, to bring this back to the issue of bodily autonomy, let’s look at how this plays out when Jehovah’s Witness teens are in need of medical treatment. Let’s say a thirteen year-old girl (or boy) comes in after being in a car accident and she’s lost a lot of blood. Recognizing there are times where blood substitutes (e.g. Hartmann’s solution, lactated Ringer’s solution) may be used in medicine, there are still some situations where these are medically inappropriate or inadequate. So, for the purposes of this discussion, let’s say this situation is one where doctors agree that the patient will surely die unless they receive a blood transfusion.
If the girl is unconscious, parents are usually given the legal responsibility of making medical decisions for her. Now, if those parents are Jehovah’s Witnesses, their religion says they must refuse to allow their child to receive a blood transfusion. This applies even if the teen has never been baptized into the faith, by the way.
In such a situation, doctors can go to the courts and seek to have them appoint a temporary guardian for the child on the grounds that the parents’ blanket rejection of certain treatments regardless of what’s deemed medically appropriate is not in the child’s best interests. I’m fairly comfortable with that, I think. I wish there was a better way but I really don’t know that would look like.
But what if the patient, this same Jehovah’s Witness teen from the hypothetical scenario, is conscious when they are presented before the doctor for treatment? If the baptized thirteen-year-old doesn’t refuse to receive a blood transfusion, then they face complete rejection from their entire community by being disfellowshipped. The parents are required to inform the clergy if the child does express a willingness to receive blood, so it’s not as if the child can simply keep their decision private. However, if the doctors go to court and have the decision taken out of the parent’s hands, then their religion doesn’t consider the teen to be guilty of disobeying the edict regarding blood, in effect allowing them to receive potentially life-saving treatment and avoid being disfellowshipped.
This means that the courts (or their appointed representative) might make a decision that goes against what the teen actually says she wants or what the parent says the child would want. Of course, it doesn’t take a lot of effort to see how that sort of thing might be ethically problematic. Still, if the religion does provide an exemption from punishment for those teens who have the decision taken out of their hands, should the medical establishment and the judicial system provide them with the means to avoid the draconian reprobation and isolation they’d otherwise face if they dared admit to wanting to accept blood?
Over the years, I have seen how our society tries to make people with disabilities feel guilty for wanting to live. When it comes to requiring several assistive devices in order to continue existing, the assumption is “Of course, no one would want to live that way!” I can’t even count how many times I’ve heard non-disabled people say something to the effect that they’d rather die than live with this or that disability.
Well, ya’ know, some of us just don’t feel that way. Some of us can think of far worse things to have to live with and we are quite willing to adapt and accept whatever limitations our bodies might impose on us. However, when you know that the health care system is set up in such a way that your long-term survival might very well send your family into financial ruin that they’ll never be able to dig themselves out of, it’s hard not to feel guilty about wanting to continue living. When you know that your continued existence will probably mean that your loved ones will have to forgo many of the activities that they formerly enjoyed in order to care for your basic needs, it can be difficult to just ask them to keep on sacrificing until your body gives out. Or at least, that was my experience when The German (my life-partner) was forced to provide all of my care from the moment I left the hospital after my chest surgeries. We were looking at a situation where no one could really tell us how long I was going to need a lot of care or even how long I’d be alive to need any care at all. We had to deal with the possibility that he’d be responsible for caring for me until the cancer killed me. I wonder if non-disabled people can understand the depth of guilt this all brings about.
Understanding the pressure that society puts on people with disabilities and the added threat of public humiliation and utter rejection from your family, can Jehovah’s Witness teens really be expected to be able to express a desire to accept treatment that might go against the official teachings of their religion? Maybe some can and I’m sure some do. However, I’d wager there are a fair number who wouldn’t be able to resist societal and religious pressure to choose death rather than consent to certain forms of treatment.
As a feminist with a recognition that we live in a patriarchal society, I’m concerned about how those Jehovah’s Witness teens who are female will suffer even more than the boys in the religion because many (most?) of the Abrahamic faiths seem to be practiced in a way that leaves girls less equipped to survive on their own if they choose to leave the religion they were raised in or they are kicked out of it for some reason.
I’m not sure what the bottom line is here, folks. How do we weigh the need to respect everyone’s bodily autonomy with the awareness that sometimes people are not (or do not feel) free to voice their true wishes? When it comes to abortion, it’s fairly easy for me. As Shannon just pointed out in her post, generally speaking, abortions don’t hurt women. However, not having enough blood to sustain life definitely hurts. In fact, it’ll kill you.
I wonder, does the principle that teens are old enough to decide whether or not to seek an abortion mean that we should always abide by what other medical decisions they say they want to make? Should an exception be made if we know that they are under intense coercion by religious leaders and adult family members? Conversely, if Jehovah’s Witnesses think that teens are mature enough to decide that they are willing to die rather than take blood, is it contradictory for them to claim that teenagers are not mature enough to understand the repercussions of having an abortion?
I know this post touches on a lot of subjects but I’d really love to hear what folks think about the questions I’ve raised and any of the other aspects of this issue.
The frenzy surrounding John Edwards extra-marital affair has provided the media with a perfect chance to explore the complexities of sexual relationships involving people with disabilities. As usual, this opportunity looks like it is going to be completely squandered, so I figured maybe I could do something to change that. Besides, I just really like talking about sex whenever I get the chance to.
My first college sweetheart and I were together for three years before breaking up. I was physically disabled but undiagnosed when we first started dating. We had the nice sort of (vanilla) sex life that I think was fairly typical for two non-disabled people beginning their adult lives. However, once I was diagnosed with Systemic Lupus, the whole relationship went south. Well, actually, it went west because he decided that he just wasn’t cut out to be anyone’s caretaker yet, so he left New Orleans and moved back to his hometown in California for a while.
I’m fortunate. That was the first and last time I was dumped because of my disability. The next relationship I entered into was with my best friend (The German) and we’ve now been involved with each other for ten years. I came into this relationship as a self-identified PWD (person with disabilities). I’d like to say that he knew what he was getting himself into but how things start are rarely how they end up.
A few years after we got involved with each other, I was diagnosed as having a rare bone cancer in my chest. Then, three years ago, he was attacked by a German Shepard and knocked unconscious when his head slammed into the side of a truck. This left him with damage to his spine and brain. At that time, I was still going through treatment for my cancer and in need of a lot of caretaker assistance. Suddenly, instead of one PWD being cared for by a non-disabled partner, we were two people with disabilities trying to take care of each other. It was a rough transition.
If you saw how difficult our lives became, you might have concluded that we wouldn’t have the time or energy to even think about sex, but that wasn’t the case. In fact, we started having even more sex. Yeah, that’s right. I said it. Our sex life got even better than it was before.
Having cancer is extremely stressful and physically traumatizing. After the rigors of rounds of treatment, sex helped me reaffirm my sense of ownership over my body. Though the radiation and surgeries brought me to the very edges of what the human body could withstand, none of it made me want to stop having sex. Picture spending months (and then years) of your life, being pressed and twisted and turned, under, behind and between machines. Now try to imagine how you’d gather up the strength to keep going even though you’ve already been told that, no matter what you are willing to endure, none of it is going to cure your body. Being able come home and have that same body kissed, caressed, and worshipped kept me going.
My doctors warned us that there wasn’t any reason to believe that I was going to live much longer. Surprisingly, this also improved our sex life. Hey, if you’re going to die soon, screw visiting the Eiffel Tower! Instead, why not enjoy as many orgasms as you can during the interim?
Also, the knowledge that your time to enjoy experiences is quite limited can be powerful motivation to try out all of those things you’ve considered trying but never got around to doing in bed…or other locations. We stopped waiting for perfect opportunities to come along and started making the most of each moment, regardless of back-aches, soreness, sleepiness, or less than ideal locations.
Oh, I know this must all seem like too much information to some but there’s a reason behind it. I’m really fed up with people assuming that people with disabilities aren’t sexual beings, capable of having fulfilling physical relationships with others. Furthermore, a lot of us are having great sex lives with each other. In other words, don’t assume that we are all desperate to find some non-disabled person willing to get us off. Some of us actually prefer to share our bodies with those who can understand what it means to live in a society as a person who is seen as non-sexual, abnormal, and only worthy of pity, simply because our bodies don’t match up with society’s ablist norms.
Just so you know, I’m not the only PWD who sees disability as a catalyst for all sorts of sexual possibilities. In case you’ve never heard of it, check out this video on Sins Invalid:
Right now, JusticeWalks has a post on her blog called “Anxiety” where she discusses her feelings about an upcoming procedure she will be undergoing. In it, she makes a connection between the body trauma associated with surgeries and the experiences of those women of color from our past who have suffered under patriarchal systems. She writes,
I am concerned about people having access to my unconscious body - seeing it, touching it, judging it - when I am totally unable to defend myself against insult or violation, unable to cover my burns or hide my disfigured hands and feet, unable to speak back in my voice, which has always obscured my hurt, but which has always gotten the more important point across, whatever it was at the time. I am pretty sure I will be menstruating when I have the procedure, and I am especially concerned about people having access to my unconscious, menstruating body.
However, what really struck me was where she wrote,
It almost seems like blasphemy, for me, with my protections of intellect and eloquence outside of these finite circumstances and barring trauma, to feel so haunted by the thought of spending a few hours of my life as vulnerable and exposed as some women spend their entire lives.
That really hit home for me. It made me consider something that I have only discussed with less than a handful of people in my life. Every time I am anesthetized, I wake up feeling raped. On the one hand, I know that I’ve agreed to the procedure, but that doesn’t erase the body trauma that I feel knowing that I have been handled, examined, cut, and penetrated—all while I was completely out of control and unable to withdraw my consent. I remember when I woke up from my third surgery and there was a catheter that had been inserted into me. I suppose I should have realized they would do this but I do not like the fact that, when explaining the upcoming procedure on my back, my chest and my neck, nobody mentioned the fact that I my vagina would be partially shaved and penetrated. To me, that just seems like something that should be specifically pointed out prior to any surgery where this might take place. I mean, should we just EXPECT to be penetrated while we’re unconscious? I don’t think I’ve ever gotten over that. Even though I will be eternally grateful for how they saved my life, I still can’t help but think about it all.
My first surgery was performed by a black, female surgeon. That procedure didn’t leave me feeling quite as bad as the third surgery would later on. I wonder if the differences in my reactions were related to the fact that I knew that it would be a woman cutting and penetrating my body, a woman of color, just like me.
Monday, August 18, 2008
What the deal with how Elizabeth Edwards is being portrayed in the reports about her husband’s philandering?
It might not seem like a big deal to other people but, I just want to yell into the television every time I hear someone refer to Elizabeth Edwards as “terminally ill”. This woman is not dying, at least any more than you or I or anyone else is dying. Edwards is still walking around smiling and talking and taking care of her children. What more does a person have to do to be considered among the ranks of those still living? Can we stop with the news reports calling this woman’s cancer “terminal”? Please? Yes, she does have cancer, but it isn’t terminal. It’s incurable. There’s a helluva difference between the two.
Friday, August 08, 2008
Urgent Action: “Justice” vs. Garcia may cost the wrong person’s job
Tuesday, August 05, 2008
Sunday, August 03, 2008
I know, I know! Other women that I greatly admire have talked to me about why it is almost always pointless to even engage in conversations with radical feminists (who are overwhelmingly white, Western, non-disabled women in number) because of the eurocentric, racist, ablist past that is associated with radical feminism. I feel like they are right in that we don't need to educate them or answer their questions because if they want answers all they have to do is go and read what other feminists have already written and spoken about this stuff.
I've been trying to understand why I feel so compelled to try and discuss the nature of bigotry with white people. I think part of it, okay A LOT of it, may have to do with my feelings about who I am. I mean, when I think about non-disabled people as a class, I don't feel like they are a group that I belong to so, when non-disabled people do something that is ablist, I don't feel like they are representing the group that I belong to so I don't have to disavow their actions or feel particularly responsible for them. However, when I think about white people as a class, I can never quite get it out of my mind that this is a group that I am inextricable from for several reasons.
Most of the black, NDN and latin@ people in my life can state with relative certainty that there's probably at least one or two white people in their ancestry. I mean, even if they don't know the ancestor's name, unless you are among the first or maybe second generation born in this country, a person of color is probably going to have some white ancestors. For most of people of color I know, this isn't really a big deal. I mean, we do have slavery and the systematic raping that went along with it to thank for some of those white ancestors of people of color.
Because of how they got there, lots of folks aren't exactly thrilled about the existence of their white ancestors. I know I've probably got some white ancestors that entered my family tree that way too and they are not even worth remembering so I'm glad that there isn't a record of who they are. My issues have to deal with my other white ancestors, the ones who are there because of consensual relationships between people of different ethnicities.
St. Patrick's Day comes along and I'm always feeling like "Yeah-hay! A toast to my clan, every woman and every man!" and it feels really good to think about the shared experiences of Irish immigrants and people of the Maafa. I like to think about how my French ancestor Lafayette was an active abolitionist and advocate for religious tolerance. I'm REALLY proud of that. I rarely talk about my heritage without
Then there's my inter-racial relationship/immediate family. My partner has a German heritage and he's really proud of that and it's something we celebrate here. I've got my Oktober-fest shirts and I never pass up an opportunity to eat some wursts and drink some German lager. Hell, even our car is German. My daughter's bio-dad has an Sicilian Italian heritage. I'm not Italian but I sure do my best to teach her about the accomplishments of people of Italian-descent.
All this means that, beyond the ancestry that I had no control over, I have chosen to be a part of a very whitened world. I think that this makes it harder for me to just feel like white people's actions don't also reflect on me. When somebody who is white does something egregiously bigoted in front of me, I just start to feel like other people of color can look at me and say "You chose THESE people to share your life with?!"
I want so badly for white people to be like the ones in my family. I'm not looking for them to never engage in bigoted behavior but can they at least refrain from telling the rest of us that we are imagining things or exaggerating when we point out how their behavior affects us? My partner is great. My mother-in-law is the kind of woman that I'd be friends with even if I'd never have met her son. My sisters-in-law are sweet and caring and wonderful aunts who spoil VanGoghGirl with lots and lots of attention (and presents).
None of them specifically self-identify as feminists, even though I think their actions prove that they are. I think that is part of the reason why it bothers me to no end when other women who do call themselves feminists do things that I could never imagine my loved ones doing. When someone goes beyond that and decides to proclaim to the world that they are a radical feminist, it just seems to me that there's some responsibility that they are supposed to be willing to take for their actions.
I keep hoping for this to be something that radical feminists will do, but it just doesn't happen.
July 29 at 1:36am
Anthony Kennerson points out that he sees the picture as depicting people of color and identifies himself as a person of color.
July 29 1:43am
Renegade Evolution identifies herself as a Jewish woman who also saw the cartoon as racist.
July 29 1:50am
Gayle refers to those who have pointed out the racism as losers.
July 29 2:14am
Gayle says she thinks calling the picture racist is funny and pitiful.
July 29 2:22am
Belledame222 points out that some of the people saying that they are experiencing racism here are people of color and points out that several of us came to this same conclusion separately.
July 30 2:05am I identify myself as a woman of color
July 30 2:24 am
I identify myself as a black/mixed race woman of color
August 1 1:36pm
Sis/Pony refers to a woman of color as a shithead
August 2 10:45pm
Jen says "Might I also add that someone who assumes that every single, or at least most, women in the sex industries are there by choice, love their job, and have all sorts of agency and priviledge is fucking retarded?"
By the way, I should point out that Jen's comments were changed to read, "....and have all sorts of agency and priviledge is fucking [stupid]" without any mention of what replacing "retarded" with "stupid" says about radical feminism.