Monday, February 27, 2006

Mardi Gras Madness

Commentary: New Orleans Can Make a Way for Mardi Gras, but Not for its People?

Why shouldn't we count on a big turn out for Mardi Gras? I wonder if Deborah Mathis has ever been here for Mardi Gras? Does she understand the level of commitment shown by those who do attend yearly? I don't think so. As a matter of fact, the streets have been absolutely packed with tourists, not just die-hard party-goers, but also those who traveled here for the first time because they understand that seeing the spirit of the city first-hand and witnessing our determination to overcome the odds does help the situation. Because of the cutbacks experienced by so many programs, there are now thousands of organizations that have their hands out in need of funding. When someone comes here and experiences what it's like to be in the city right now, they are much more likely to put their money where their mouth is and contribute to the many deserving New Orleanian causes.

You see, self-indulgence and frivolity isn't what's drawing people to come to Mardi Gras this year nor is that it's main draw any year. Mardi Gras is a tribute to life and the resilience and splendor of this great city. It's about being true to what we are--bon vivants with more joie de vivre than people like Mathis would likely know what to do with. That's why folks would come here for Mardi Gras even if there were no houses left standing because structures aren't what made New Orleans. The people, the kind of characters that would wake up at the crack of dawn and dress up in tuxedos bedecked with a million+ sequins or molded-refrigerator costumes or Swamp Monster outfits covered in itchy Spanish Moss and stand in the rain for hours to show their support for the city--they are what makes New Orleans great and they are the reason why people come. Few people leave her claiming that it wasn't even better than they expected it to be.

By continuing our tradition, New Orleans is concerning itself with the people who lost so much here. Who do you think works those jobs at restaurants and bars and hotels when these tourists come? Who do you think rides those floats and sponsor those magnificent balls? It's the people who live here. Even if the city made nothing off of Mardi Gras directly, it would still put money in the pockets of people who are trying their hardest to get back on their feet.

If someone out there in the world feels that the children here need beans, then by all means let them send us some. We'll make a gourmet meal out of them. However, if someone chooses to use their own time and money to go out and buy beads, toys, and other trinkets to give New Orleanian children the opportunity to see that life goes on even after the hurricanes, then God bless 'em for understanding southerners. And if you happen to be one of those people who understand how to mix activism with fun, you can come down and see the parades and also participate in the home-buildings sponsored by Habitat for Humanity, Home Clean-Outs sponsored by ACORN, volunteering at the public hospitals, and all sorts of other activities the city has planned to make use of all the willing extra hands that will be in town.

Now, to answer the question: "Shouldn't the city dedicate every iota of energy, target every appeal and pour every dollar into New Orleans, the hometown, moreso than New Orleans, the tourist trap?"

The city should work intently towards making New Orleans the hometown of a lot more people than are currently residing here. At the same time, it should devote its energy to all that the people here find important and that includes Mardi Gras. It was this culture that produced the first original music form in this country and it is this culture that has kept it alive all the while. It is this culture that continues to churn out the best Jazz and Blues musicians in the world. It's one of the only places in the world where, on any given day, you can just walk down the street without a dime in your pocket and go see free, live music so sweet you'd remember the experience for the rest of your life. It's celebrations like Mardi Gras that keep international visitors coming and spending their Pesos, Rupees, Euros, and Yen despite how unpopular this country is these days. So, if we want to take two weeks out of our year and celebrate the fact that we are still alive, then I think we've earned the right to do so.

If folks like Mathis think we shouldn't worry about stuff we can't use, then I guess we should simply disregard the ill-informed opinions of those on the outside looking in...unless they plan on just giving us the 20 MILLION DOLLARS Mardi Gras is projected to bring in for the city.
So, will that be cash, check, or charge?

Thursday, February 23, 2006

Fry Bread Anxiety

Well, it's Mardi Gras time down here in Louisiana. Unless you've visited or lived here, it's pretty impossible to understand the significance of that. Technically, it's a Catholic holiday but everybody celebrates it here. Okay, everybody except the Jehovah's Witnesses and that's cool because we all have to do our own thing but, for everyone else, this holiday is bigger than Christmas. After the two hurricanes last year, a few people suggested that the school system down here might need to cancel some of the school holidays to make up for the days missed due to the power outages, flooding and downed trees. However, the school board members were wise enough to know they'd be branded as the anti-Christ were they to actually suggest doing away with Mardi Gras vacation.

Despite all of the festivities, I have bigger things to think about. Along with it being Mardi Gras time, it's also Black History Month. While the regular-paced classes at VanGoghGirl's school have been taking trips to the African-American History Museum and reading books about Harriet Tubman, her class has been working on another project. Her teacher decided that since only three of the students in the gifted class are "Black", she'd have her students create projects about an individual that shared a part of their ethnic background. I think that the program's under-representation of black students made focusing on Black history even more essential but since VanGoghGirl was really excited about this exercise and didn't want me to push the issue, I decided to just focus on helping her get it done.

The project was rather simple. She had to choose an individual, write a report on the person, give a presentation, and bring in a food item from the person's culture. VanGoghGirl chose Crowfoot. Over a period of two weeks, she gathered information and turned in her rough draft. Somewhere in the process of working on the Crowfoot project, I figured that it would be really great if we made fry bread for the kids in her class. VanGoghGirl really liked my idea and I was absolutely proud of myself for coming up with something that she'd agree to without an argument. Of course she went to school and told her classmates about our plans. They were all pretty excited to hear that she was going to be bringing in some "real" Native food for them to try. Earlier this year, VanGoghGirl was the girl of the hour when the class was studying Native American culture and she came to school in her homemade beaded dress and moccasins. She got me to paint her face and answer questions for her classmates and teacher (e.g."Yes, little ones, some Native Americans are Black too").

The very next day, I woke up in a panic. What in the world was I thinking? Why didn't I just convince my daughter to do a project on Chinua Achebe or General Lafayette? Okay, even though we actually are direct descendents of General Lafayette, there was no way I'd have suggested that she do her Substitute-of-Black-History project on someone who wasn't at least a person of color. Still, it sure would have made things easier if I had suggested something other than fry bread to make. I've never made fry bread by myself. In fact, I'm pretty sure that the last person in my family who had made some was my grandmother and she's been dead ten years.

My grandmother was a beautiful woman. She had jet black hair and wonderfully round eyes. She also had the most gorgeous legs I've ever seen on a woman and she was very proud of them. For as long as I could remember, she'd worked as a maid in one of those ritzy hotels in downtown New Orleans. Whenever we'd go to visit her, she'd give us handfuls of the chocolate mints and pirouline cookies the maids left around the hotel rooms for the guests. She's the reason why I started collecting coins. The Dauphine Orleans gets a lot of international guests. My grandmother said that, occasionally, guests would leave their tips in foreign currency and sometimes the amount was too small to make getting it changed over to dollars worth the trouble. So, she saved the coins for me.

My grandmother didn't read books; She devoured them. She sped through books at a speed most people would find unbelievable. After my grandmother died, my mother told me that my grandmother had been the valedictorian of her class. It's easy to see why my grandfather married her. She was the prettiest and the smartest of all her sisters. She was also the darkest. I was told that her sisters were quite jealous that the darkest of them had attracted a passe blanc man like my grandfather but that's a story for another day.

After my grandfather died, she came to live with us. Those years were great. She continued working at the hotel during the day even though she didn't have to. My mom made enough money to be able to take care of her but she didn't push it when my grandmother said she wanted to keep working. Looking back on it, I can see how working was good for my grandma. It gave her a circle of friends, a reason to get up every day, and a means to express some autonomy over her life.

Grandma also suffered from Diabetes. That's really no anomaly in my family. She wasn't overweight but her diet wasn't exactly healthy. It was still better than the eating habits of the average southerner, that's for sure. However, it wasn't what it needed to be in order for her to manage her Diabetes well. My mother and her sisters did their best to watch over what my grandma ate but they couldn't keep their eyes on her all of the time. Sometimes my grandmother would go in the kitchen late at night. If I heard her, I'd creep in as quietly as I could so as not to wake up my brothers because then I'd have to share my time with Grandma with them too.

On nights like that, my grandma would ask me if I wanted her to make us a snack. My answer was always in the affirmative. She would tell me that she'd only do it if I promised to be really quiet because she knew my mom wouldn't approve of me eating at that time of night. Years later, my mom told me that the real reason why my grandmother made me promise to be quiet was because she knew that she wasn't supposed to snack like that and my mother would have stopped me and my grandma from eating it if she had woke up and caught us red-handed. Back then, I didn't know much about Diabetes. If I had, I probably would have turned down my grandma's offers because it was never about being hungry.

Most of the time, she made fry bread. It was the perfect comfort food. What's not to love about something fried that you can cover with honey, butter, preserves, sugar and cinnamon, or any spice you happen to have in the pantry? You can put some meat between two pieces and have a fry bread sandwich. You can put some tomato sauce and cheese on top and make fry bread pizza. If you really want to get fancy with it, you can put a scoop of ice cream and berries on top and have a fry bread sundae. Okay, perhaps that last variation was a bit over the top but, trust me, I've seen it done before.

Most of the time, Grandma just topped it with butter. How could something that simple be so delicious? In my eyes, it was the food of the gods. It was also one of the last vestiges of my family's Native heritage. Like most people who are Native and Black, we are not "card-carrying" NDNs. I didn't realize that made a difference to some people until I grew up. My grandparents were dead by then, so I never got to ask them how they felt about that. For me, it is a painful recognition.

It doesn't matter to me what non-Natives think about this issue. After all, we have white people to thank for establishing the ignorant blood quantum policies in the first place. The problem is, many Natives joined in and actually started trying to judge who is "more" NDN according to this measure. I shouldn't even call it a measure because that might give the impression that there's something objective about it all.

Blood quantum is a lot like race. That should give you a good idea of how much logic and reason have anything to do with how it's determined. Because blood quantum does matter in the eyes of so many people, it's not something that I believe we should just dismiss as unimportant. However, for me, it's not how I define NDN-ness. I've met Natives who were raised on reservations their whole life but seem to have no appreciation for their identity. I'm not saying that to slur rez folks because if it weren't for them, I have no doubts that the U.S. government would have taken over NDN sovereign territories a long time ago. I'm just trying to point out that pride in one's NDNness isn't determined by where you live or what a government policy says you are. Heck, blood quantums isn't even how our pre-colonial ancestors defined themselves. So, not accepting them is certainly the more "authentic" NDN position to take.

Nevertheless, every culture needs to define itself by something. In other words, saying that I reject blood quantums isn't enough to make me NDN. So, what does? I define my NDN identity by the connection I have with those who have come before me. Do I know what NDN nations my ancestors come from? Yes. Does my family still organize itself around the ways that my ancestors did? Yes. Do I fight for my brothers and sisters to have the "right" to choose how they should be defined? Yes. Do I teach my child to respect and honor the past by how she lives today? Yes. These are the things that make me a Native American woman. Were I no longer able to answer these questions with a yes, I don't believe I could justify calling myself that.

So, what does this have to do with fry bread? Well, until VanGoghGirl's project, I didn't realize that it did. You see, even though I can answer yes to all of the above questions, there's one I left out: Can I make fry bread? After all, it's been ten years since my grandmother died and I have never even tried to make it before now. I've eaten it. Lord knows you can't go to an NDN function and not find any. You can also find some incarnation of it at most festivals held down here thanks to the fact that Louisianian culture has been heavily infused by Native recipes and practices. But that doesn't mean that I can make fry bread. And what kind of NDN can't at least do that?

Even I can't be sure how to answer that question. My mother and her sisters came of age in a health-crazed generation. My cousins and I grew up eating bread that was whole wheat, not fried. That's another reason why Grandma's fry bread was such a special treat to me. It certainly wasn't the main reason. What made it really special was that she fried it.

This usually-quiet woman would actually talk when she cooked. Much of what she told me about her life came while she was making dough. More than anything else, that's why I never tried to make it after she was gone. Even if I had managed to keep all of the proportions just right, there would be no stories to accompany the process. Turning the flour and water into something edible seemed like nothing but a chore without those serious eyes and warm smile looking back at me, but I'd committed myself to making fry bread, not just for me but also for the rest of my daughter's class. If you know anything about tweenies, you know that there's no such thing as backing out gracefully once you've already gotten their hopes up high.

Finally, the night came when I couldn't put it off any longer. VanGoghGirl wanted to help me make the fry bread but she isn't quite old enough to work with hot oil. So, I sent her to bed and started making my plans. It's really a straightforward recipe; You use three dry ingredients plus water to make the dough. I put a few cups of flour in my big purple mixing bowl. My grandma's mixing bowl was green. I wonder what ever happened to it. I added the baking powder. Actually, I added too much baking powder. Fortunately, the baking powder was a slightly different shade from the flour. I was able to take my measuring spoon and scoop it out. The second time I got it right. After that I added a few teaspoons of salt to the mixture. Can you believe that in the four years that I've lived here, I'm still using the same container of salt that I purchased when I originally stocked my pantry? That fact would make my mother proud. She almost never uses salt in her cooking.

My mother is a lot healthier than my grandmother was. Hopefully she'll never have to deal with Diabetes. My grandmother eventually had to get one of her feet cut off, then the doctors went back and amputated that leg up to the knee, then they removed her other leg up to the knee too. Not long after that, she died.

My mother was her oldest child. My brothers and I got to know my grandma a lot better than my cousins did. They only remember what she looked like and that they used to visit her sometimes. They never got to have late night fry bread conversations with her like I did.

After I mixed the dry ingredients, I poured the water into the bowl. I used a whisk to try and stir it all together. That didn't work out so well. To mix fry bread dough, you have to use your hands. That did the job. The German came in to see how it was going. I sprinkled a few drops of water on the oil to see if it was hot. He said you're not supposed to do it that way. According to him, you're supposed to take a little piece of bread and drop it in to see if it just gets soggy (the oil isn't hot enough) or browns (the temperature is just right). Of course, I rolled my eyes at Mr. Know-It-All. He snapped off a piece of my fry bread dough and dropped it in the oil. "Okay, it's hot enough", he said and gave me one of his favorite smartypants smirks.

With the best authoritative air that I could muster, I rolled a piece of dough into a ball and then flattened it between my palms. I quickly dropped it into the oil to keep The German from trying to take over completely. The pale white dough patty sank to the bottom of the pan for a few seconds and then bobbed back up. I turned and looked at The German as if to say "See, I know what I'm doing", but when I looked back at the stove, my fry bread was no longer a patty. It was a mountain. Suddenly the surface of my fry bread opened up in the center and the innards started rising like molten lava that's just about to reach the top of the volcano. As if on queue, The German asked me, "Is it supposed to look like that?" I almost started to cry. A sudden memory was the only thing that prevented it. My grandmother always put a hole in the middle of her dough patties. If I hadn't been trying to show off for The German, I probably would have remembered that before I dropped one in.

"That explains it", he said sympathetically. I made another patty. This one had the requisite hole in the center. The hole that you make in the center of a fry bread dough patty isn't like a donut hole; It's smaller. When the bread is done, you can use that little space to hold a couple of berries or a pretty puddle of honey, if you like. My grandmother knew how to form a hole that was just the right size so that when it was fried, you couldn't even tell that there had been a hole there at all.

I carefully placed my hole-bearing dough patty in the hot oil. It went to the bottom of the pan and rose back up and then a magnificent thing happened. It began to turn brown. At first you can't tell what color it is on the bottom but when edges of the patty start to turn brown, you know it's time to turn it over and cook the other side. I flipped my fry bread over and, to me, it was truly a sight to behold. It wasn't the dark mahogany color of my grandmother's skin and it wasn't the pale cafe au lait tone I see when I look at my daughter. It was a mouth-watering shade of medium, perfectly-cooked brown.

After the second one, the rest were made with ease. As I should have expected, The German decided to join in. I let him make the patties and I flipped and removed them from the oil. We made more than enough for all of the children to try tomorrow. We're going to serve them with raspberries and honey. In about three hours from now, it'll be time to wake up VanGoghGirl. I can't wait to show her our fry bread. Maybe I'll make it again this weekend. She's not too young to at least learn how to knead the dough.

VanGoghGirl's "Karishma"

Sunday, February 19, 2006

Who are YOU?

I am like this because it was necessary
In order to survive the experiences I have had.
I was not always like this.
Being this way has had it's ups and downs but,
Overall, it has made me more resilient.
I don't know if I'll always be like this.
I hope that one day I will be even better,
If not, I'll be satisfied to at least be alive.

Who are you, really? How did you get that way?

Thursday, February 16, 2006

Blaming the Victim

In this on-going dialogue that BrownFemiPower and I have been having, one post mentioned how some people react(ed) to the news that I have cancer. Most people have been kind but I've had more than a few engage in the not-so-friendly game I call "Blame the Victim". I'm sure that anyone who belongs to a historically marginalized group is familiar with it but I'll sum it up for those who might not be so experienced with it.

"Blame the Victim" basically asserts that if something really bad happens to you, it must be the result of something you did or something you failed to do that should and could have been done. This morning I heard a version of "Blame the Victim" on C-SPAN where a caller said that those who perished in the floods of Hurricane Katrina were at fault for their own deaths because they shouldn't have depended on the government to take get them out of harm's way. Of course, this obviously brilliant caller was not a resident in the hurricane-affected areas that he spoke about.

This stance seems quite popular among those who gravitate towards certain political affiliations and I think many of us have grown used to hearing it expressed by both political leaders and followers. Unfortunately, the victim-blaming mentality is not confined to a few issues where (wo)men of goodwill can disagree.

One woman who is of my mother's age-group told me that I probably got cancer from taking the medicine I was given for Lupus instead of just the herbs that she had suggested. Another person told me that letting myself get so stressed out in the past caused my cancer. I just don't understand how someone can possibly think it's appropriate to tell someone something like that.

I recognize that some diseases are acquired from engaging in irresponsible behavior but I still don't see it as proper to go around telling people that you think they caused their own illness. Isn't that just begging the Fates to teach you what the universe is capable of doing to judgmental people? If we're all honest with ourselves, we can't deny that everyone on this planet has done something that could have led to them getting some horrible disease. I don't believe in taking a fatalistic approach to one's health but sometimes who gets cancer, HIV, Mononucleosis, etc. is just the luck of the draw.

Back when I worked at a pharmacy, I saw this truth in action. I was a college student so, I got to know quite a few folks who would go out during events like The Bayou Classic and engage in one-night-stands and come away from it all fairly unscathed. I'd also go to work during that time of the year and see people come in with prescriptions to treat what we called "STD Cocktails". The "cocktails" were the cases where the person engaged in the same sort of one-night-stand activity as the unscathed folks but instead they came away from it all with three or four sexually transmittable diseases. Many diseases are simply not respecters of how often or infrequently one engages in certain activities. Throughout my life, I've tried to keep all of these things in mind whenever I'm tempted to look down on someone because of where they are in life. Any one of those situations could wind up being something I face one day and I'd sure hope that others would have sympathy for me instead of disdain.

Tuesday, February 14, 2006

The Results of Sexualizing Disabled Individuals

Lately, BrownFemiPower has been acting as my muse. I was blessed to have her respond to my Sex & Disability posts. You can take a gander at them below my post here. Her questions are too tempting for me to pass up the opportunity to answer them. Well, I'm not so conceited that I believe I can provide the answers but I can certainly explain how I see things. Yallah, let us proceed.

I really wish that I had seen these programs so that I could critique each of them separately. As it stands, I can only judge them from how they've been described and what I've observed on similar shows. I am of the opinion that any depiction of disabled people on the Howard Stern show is likely to feature the exploitation of "the odd and unusual" for the purpose of entertainment. That's his niche and he is quite effective at filling it.

I've found that PBS is usually rather progressive when it comes to handling portrayals of individuals with disabilities. However, I do not agree with broadcasters using the issue of how disabled people engage in sex in a titillating manner to draw in an audience. It's a cheap ploy that those with real talent would not resort to in order to keep people's trigger finger off of the remote control. I'm not surprised that this occurred, though. When it comes to television programming, viewership seems to rule everything. If the Discovery Channel wants corporations to purchase advertisement time with them, the programming has to attract a significant amount of people. Such pressures are, evidently, enough to contribute to them engaging in exploitation from time to time. As the Bible says, "there is no new thing under the sun", so I guess that's to be expected though not respected. Just yesterday, I saw CNN broadcast a story about a woman with Body Dysmorphic Syndrome. CNN exploited her troubles in a similar attempt to get the viewer to stay tuned in past the commercial break.

BrownFemiPower asks "how does the sexualization of disabled people by a broad power structure further violence against disabled communities?" Honestly, I don't think we can know for sure. If what has occurred in the past is any indication of what we should expect to see, it's very likely that disabled people would be victims of violence more frequently than other marginalized groups because some individuals with disabilities face a greater disadvantage when it comes to defending themselves physically. The abused individual on Stern's show who used a wheelchair provides a prime example of this.

I don't think we need to look at this issue as one with only two options to choose from: continuance of the idea that disabled people should not be viewed as sexual at all or a world where disabled individuals are objectified in order to excuse viewing them as having little or no purpose other than to fulfill the (sexual) needs of others. The golden mean would be a world where non-disabled individuals don't make assumptions about what individuals with disabilities should do or are capable of doing.

Because of how far the pendulum leans towards treating sex as taboo for disabled people, we have a lot of work to do before fighting sexualization needs to be our priority. Striving to make living with disabilities be seen as normal would do more to improve our lives than simply fighting against those relative few who have managed to acquire a view of us as fitting some sexualized stereotype.

I don't believe that if society were to eventually accept disabled individuals as sexual beings, we would likely become more "rapable" than we already are. That's because our status as having disabilities already makes us quite "rapable". If we were to become members of society who are recognized as having the same sexual needs and vulnerabilities as other marginalized groups, perhaps social justice movements would be more likely to include disabled people among those who are defended and advocated for. The acknowledgement of our sexuality won't solve all of our problems but I do not believe that it would result in a net increase in them either.

I think the issues involved with those who would "rather be dead than live like that" are somewhat separate from this but I'll try to address it a bit. Personally, I do not see anything wrong with people preferring to die than to live a certain way. I think disabled individuals have a real interest in these people having that desire respected. I also have certain situations where I'd prefer death over continued life. This attitude is only problematic to me when it is based on misinformation. If someone thought that being disabled in a particular way meant that they could no longer care for themselves or have a sex life or engage in their favorite emotionally fulfilling activities, this could be why they'd rather be dead. If a particular disability didn't actually mean losing these abilities and people were aware of that, they might prefer life in such situations. So, again, the key is educating people about what it means to be disabled.

When it comes to the cultural acceptance of aborting disabled fetuses, I think we should err on the side of choice but let it be educated choice. Furthermore, I don't see the acceptance of aborting fetuses with disabilities as necessarily being a sign that society values the lives of such ones less. That's not to say that I believe society does view them as being of equal worth.

If we want to find evidence that non-disabled people view us as inferior that's as easy as examining how often society refuses to allow us to determine when and how we should die. If someone decides that they no longer want to live with some permanent disability, that decision is not respected. In many places society will even incarcerate those who try to help disabled people die on their own terms. Instead, some non-disabled people think that they are the best judges of what a disabled person should be willing to tolerate. Our views on the right-to-die issue matters very little in comparison to those of non-disabled people.

Just look at the Terri Schiavo case. There were disabled individuals who sided with Schiavo's parents and others who agreed with her husband. Did the media focus on these individuals? Since Schiavo was unable to express herself or talk about her situation, the disabled activists could certainly speak about these issues with the first hand experience that even Schiavo's parents and husband lacked. Yet the media only saw fit to use these activists to fill a few camera shots during the down time between monologues given by non-disabled individuals chosen to act as representatives from both sides.

BrownFemiPower wrote, "I guess I just always feel a bit apprehensive when the sexuality of oppressed groups gets analyzed by non-oppressed groups". While I can understand why that is, I feel differently. I get really excited by the opportunities for progress that exist when non-oppressed groups discuss such issues. The only way that we can ever expect to see less oppression is if the oppressors can be shown the necessity of engaging in such analyses.

Social justice movements have had some success with this when it comes to those issues that are usually championed. However, I think that the nature of such movements makes them prone to disbelief when their elitism gets pointed out. Don't get me wrong, these groups are certainly less likely (than society in general) to accept elitism when it can be proven to them that it exists. But the idea that disabilities shouldn't be discussed is so pervasive that I think it keeps even well-meaning, generally enlightened, individuals from making a concerted effort to get representation from the community of disabled individuals when they are trying to put a face on their cause.

As I see it, a lesbian with an amputated limb or limited mobility could discuss sexual oppression with even more experience than many of the non-disabled women that I've seen chosen to speak on that topic. It's just too easy to say that it's simply coincidence that the opinions of disabled individuals are not usually asked for. I think those who fight for justice need to stop taking disabled activists for granted. If this were to happen, I think that people would find that we (disabled activists) are quite capable of educating those within social movements who can in turn use their already honed skills to do the same with the general public.

Saturday, February 11, 2006

Sex & Disabilities--The Information Void (Part IV)

In BrownFemiPower's post, she mentioned how social justice movements have mostly failed to include the issues faced by individuals with disabilities. She states that "a very big reason for this is the fetish able-bodied people have with disabled people's sex lives" but I see things differently.

Before such movements can incorporate "disabled people's issues", these issues have to be clearly defined. That has yet to happen. I believe that this is because of the "don't stare" message people are commonly given as children. I think it's well-meaning but ultimately leads people to believe that ignoring disabilities is actually the best way to show respect for those who have them. I really don't see what the point is in teaching people to pretend that they don't see the differences that make us unique. Perhaps that's because I feel no more ashamed of being disabled than I do about being a woman or being a person of color but I'm not naive. I understand the reason why people treat disabilities as if they are something that one should try to hide.

Despite the fact that we are living in the twenty-first century, many people have really archaic ideas about disease. In the past, it was not uncommon for people to associate disease and other misfortunes with sin. The Old Testament of the Bible has several instances where God used illness to discipline those who had gone astray (e.g. Miriam's Leprosy, Nebuchadnezzar's insanity, Egypt's plagues). Given the prevalence of Judeo-Christian beliefs even in the modern world, is it any wonder that people still tend to blame people for their disabilities?

When I became disabled, I thought people would just be sympathetic and that is how most of those in my life reacted but there were exceptions and quite a few of them. Some people actually began to avoid me. Others actually tried tell me that I probably got cancer because of something I did or ate or some medication that I took. I think they needed to believe that I was somehow to blame because otherwise, they'd have to deal with the reality that they too might wake up one day and find themselves in the same shoes as I must wear. And for many people that's a very scary thought.

I think that people would be less likely to be so afraid of being disabled if they actually understood what it means to be disabled. However, the way people are taught not to acknowledge disabilities for the sake of being "polite" makes that impossible. The only way that we can change things is through education. That means answering the questions about how people with disabilities engage in the behaviors that the rest of the world participates in, including and especially sex.

Even though it would be great if people were as eager to learn about other aspects of being disabled, I am always happy to see people in the media ask those questions about people with disabilities and how we engage in sex. It may seem like exploitation and perhaps the argument could be made that it is but I don't see it that way because it serves an important service. You might assume that doctors would know to bring up the topic of sex when someone becomes disabled but I've found that this just doesn't happen, at least not as much as it should.

I have yet to have a doctor initiate such a conversation with me. Did they think someone else was going to tell me? Depending on your situation, a person with disabilities may be left without the slightest clue about what it is they are still able to do and whether those options are even within the realm of is okay for "normal" disabled people to do. Disabled people, who have been raised amidst all of the myths and assumptions people tend to have about "proper" sexual behavior, can feel too embarrassed to bring up the topic of sex with their doctors.

Given the current state of things, disabled people often have to resort to getting their information from those experienced advocates who are willing to talk frankly on the topic with the media. If disabled people who can provide such information stopped doing so, they'd be doing the rest of us a great disservice. Not only would such knowledge be kept from the general public but it would also result in more disabled individuals suffering in silence. With all of the struggles that people with disabilities face in a world where they are unnecessarily judged as deficient, not having the information needed in order to express oneself as a sexual being can make it nearly impossible to experience a feeling of wholeness.

Friday, February 10, 2006

Sex & Disabilities--My Social Circle (Part III)

I've always had really great skin. I got through my pregnancy with VanGoghGirl without even a stretch mark to show for it. Despite my childhood bouts with chicken pox, I had no scars. After rounds of surgery, I have scars criss-crossing my back and coming around to my chest. I have numb spots on my body where nerves were cut to get to my tumor. I don't exercise much, so I've put on some weight. Even though I'm still within the healthy weight-range for my height, it was really hard to deal with. Everyone used to wonder at my marvelous metabolism which had kept me at 110 pounds even after having a child. When I put on weight, everyone noticed. Some people made well-meaning comments telling me that I really looked healthier at my new weight or that I'd finally acquired a more womanly figure. All of it made me focus on my changing body when what I really wanted was my old pre-cancer body back.

When friends and acquaintances would say that I looked great, they invariably followed it up with remarking how I "don't even look like I have cancer" or something to that effect. Why couldn't I look great because I'm wearing a really great blouse or some absolutely sexy pants? When you have a disability sometimes people behave as if they can't see anything else about you. I think that's unfortunate because it needn't be that way, but it is, and that's the world we have to deal with, especially if we want it to be different someday.

The German tried his best to help me deal with what had become the new focus for everyone's conversation with me. He bought me lots of pretty new frocks and accoutrements but when people saw me, they saw cancer. Maybe my experiences would be different if I'd had cancer and been cured of it; When people hadn't seen me for a while, they'd ask me if I was in remission yet and I felt like the best thing I could do was tell them that remission wasn't really considered a possibility for me. At first I'd answer the remission question by simply saying, "Not yet." However, that created a situation where people would ask me the question again later because they didn't realize that it was no more likely to have occurred then than it was the first time they asked.

When I let people know that remission wasn't in the works, some assumed that I'd be buying the farm pretty quickly. That didn't happen either. Lots of people don't really understand the difference between "incurable" and "terminal". God only knows how long I'll live with incurable cancer but that doesn't mean that I'm about to die very soon. Now, technically, I am considered terminally ill but I've come to see that this is because my cancer is so rare that they really can't determine how long I'll be able to live with it. So, for all they know, I could outlive lots of folks and that's what I fully intend on doing for as long as God allows me to. So, my feelings about my disabilities don't always match with what other people believe about my condition .

When people look at me, I don't want them to automatically "see" me as a disabled individual. Sometimes I'd like them to see me as a woman first or a person of color first or as a mother first. But, for most people, when they see a person who's limping or in a wheelchair or using some other assistance device, that becomes the first and last thing they see. There is some irony in this situation, I think. Even though people tend to use your disability to define you (e.g. "That handicapped girl", "the retarded boy"), most people still don't automatically recognize it as a topic as worthy of discussion and debate just as much as sexual orientation, gender, or ethnicity has come to be considered.

Thursday, February 09, 2006

Sex & Disabilities--My First Exposure (Part II)

When I was in high school, I hadn't been diagnosed as having any physical disability. Despite my severely depressive episodes that landed me in a hospital after ninth grade, I was able to hide amongst the "healthy" population most of the time. It was during that ninth grade year that I met Damien. He was an attractive boy who was two years older than me and had Multiple Sclerosis (MS). Damien and his brother both used wheelchairs because of their MS. We became close friends. He often talked about his girlfriend who treated him rather poorly much of the time. It was during those conversations that I learned that not all people who needed a wheelchair were unable to have sex. Maybe it seems that I should have known that already but considering how little I knew about sex period, you shouldn't really be surprised at my ignorance.

As a matter of fact, Damien was not a virgin. He and his girlfriend Shawann were sexually active. However, she sometimes went outside of what they had decided should be a monogamous relationship. I asked Damien why he put up with it and he admitted that he really didn't think that he'd be able to find another girl who wouldn't be afraid of having sex with him because of his disability. Now, I know there are some who may think that since we were still teenagers, he should have been concerned with academics and not finding sex partners. But, whether we like it or not, many teens are sexually active and these sort of problems matter to them.

My view about Damien's worry was not as sympathetic as it could have been. I tend to try to view the world as logical as possible, even when that isn't the approach that someone's looking for. I figured that since Damien had found one person who'd sleep with him, it wasn't impossible that there might be another person who'd also do it and maybe she'd at least be a bit nicer to him than Shawann was. I don't think that made him feel any better but I was too immature to understand why that was at the time.

Well, life has a way of making sure you learn the lessons you need to know even if you don't comprehend it all the first time you're presented with a problem. When I was dating CaliGuy, we had a pretty healthy intimate life at first. To be honest, I don't know how much his eventual infidelity was tied to my disability. In the past, I viewed the cheating he did as his way of trying to end the relationship without knowing of a more mature way to go about it. Towards the end of the relationship, I did figure out that CaliGuy just wasn't emotionally equipped to handle being involved with me and being disabled was definitely one of the aspects that he couldn't cope with.

It wasn't until tonight that I started wondering if his infidelity might not have been an attempt to activate an "escape clause". Our break-up didn't ocur because we didn't care for each other any more. Eventually it became clear that, no matter how some one would define those feelings, they weren't enough to make it a healthy relationship for me to retain. It could have been that he never did love me and cleverly managed to hide that fact for a long time. However, I think it was pretty clear to us both that we were in love at first. At some point, it seems he stopped feeling the way he originally had.

In his eyes, caring for me became a chore and he began to express resentment that he felt he was putting more work into the relationship than I was, even though I was devoting as much of my life to it as I could. Our intimacy level changed but, to this day, I don't know if it changed once he started cheating or did the cheating start after our intimacy wasted away. If the cheating started after our intimacy stopped, then it may very well be that he began to look at me differently as a result of my evolving medical needs and physiological problems and then began to look for someone whom he could share a romantic relationship with. That's a little more understandable than the former scenario, even though it's still not excusable. Maybe I'll call him this week and ask him about it. Fortunately, enough time has passed where we can both talk about our old relationship without it severely affecting the friendship we've re-developed.

Wednesday, February 08, 2006

Sex & Disabilities--The Introduction

A few days ago I was visiting the blog of a woman whose views I admire a lot. BrownFemiPower has a wonderful site that you should definitely visit if my recommendation means anything at all. So anyway, I happened upon her post entitled "Disability and Social Justice". In it she discusses the way media interacts with individuals with disabilities.

What I appreciated most about it was that a sister without disabilities was actually taking up such an issue. In today's world, even really "enlightened" people often tend to act as if the most polite thing they can do is simply pretend that they don't notice other's physical disabilities at all. I'm not really one who supports the "color-blind world" idea, so you can probably infer from that how I feel about those who try to act like disabilities shouldn't be acknowledged.

After reading her words, I wrote to BrownFemiPower and thanked her for broaching the subject. In reply, she visited My Private Casbah and sent me a comment about my post regarding my recollection with Elizabeth in "Young, Gifted, and Black--The Struggle". She also left a comment asking me to elaborate on my feelings regarding her post.

It's said that imitation is the sincerest form of flattery but I think that criticism is flattery in its most intelligent assemblage. Since I agreed with much of what she said, I think it would be better for me to explain where I think I differ with BrownFemiPower. I have a lot to say about this topic, so I think I'm going to break it into several posts.

Sunday, February 05, 2006

Danish Cartoon Controversy/Freedom of Speech Issue

Well, if anyone who reads this blog has been keeping up with what's going on in the world, you might have heard about the recent problems caused by the Danish newspaper, Jyllands-Posten, which decided to solicit and publish certain cartoon images that have offended many within the Muslim ummah (worldwide family of believers). Many editorials have defended the publishing of these cartoons on the basis that it is simply "freedom of speech" being exercised and insinuated that Muslims who are offended should just "get a life", in so many words. Last night, I came across this entry on Dr. Khaled Batarfi's blog. It's the best article that I've seen on this controversy. I left this comment for him and I then I decided to post it here too.

I am no expert on such matters but here is how I see it:
Even though newspapers perform a public service, they are first and foremost corporations. Their goal is to make money. Conflicts generate business for newspapers because even people with no interest in politics are drawn to find out about current events due to their curiosity.
The Danish newspaper that started this ruckus is not new to their business. They knew full well what the likely reaction to these cartoons would be.

Just a few months ago, the world dealt with a "trial run" of a similar type when American news media reported that guards in the Guantanamo Bay prison had flushed a Qu'ran down the toilet. That controversy led to riots and resulted in the death of fifteen individuals before the story was retracted.

With that barely in the shadows, this newest event was orchestrated. So, when the riots and bigotry escalate, who will profit from it all? Why, the very people who started it, of course! The newspapers who can gleefully hide behind "freedom of speech" as an excuse for their violence-baiting. In the end, it's not about anything more than generating an income for themselves even if it's at the expense of those who act before they stop and notice who's yanking on the strings that control them.