Friday, February 29, 2008

Out and About

I got out of the house today to do a bit of shopping. We're going to be buying VanGoghGirl a new bedroom set, so we went to some furniture stores to check out what's available in the city. Unfortunately, I'm feeling a bit queasy and shaky now that we're finally back home.

I have a new roommate now, too. One of my cousins has moved in to go to school down here. She's been here for a few weeks now. I love living in an extended household. VanGoghGirl is really enjoying it, too. It reminds her of how it used to be when we lived at my mom's house when she was a baby.

Saturday, February 23, 2008

Flooding in Ecuador, The Flashbacks to Katrina

Via La Chola,

I've been watching the news every day, looking at the latest election drama--I swear it's more melodrama than "The Young and the Restless"--but I hadn't even heard about the tragic flooding that's occurring in Ecuador. Ten people have died already. I'm sure that number will increase in the next few days, unfortunately.

My God, it never stops happening to us. Because of Katrina, I've had to live with the knowledge that some of those brown bodies will never be seen again. I don't know. It's just, there's something about the idea of those bodies just floating out to sea...not even receiving a proper burial or whatever rites one might wish to say over the dead. It's not right.

Friday, February 22, 2008

Adoption Hopes as a Woman of Color With Disabilities

I've got the blues this morning. Last night VanGoghGirl was talking about her friend Junebug, again. Junebug goes to school with her and they are very close friends. She lives in a group home because the state has custody of her. In other words, she's up for adoption. Ever since she found this out, VanGoghGirl has been trying to get us to adopt Junebug. I've met the girl and she's simply charming. She's smart and witty and pretty and one year older than VanGoghGirl. In other words, she's just perfect in my daughter's eyes.

Last year, a few days before Christmas vacation, VanGoghGirl got the blues because she was worried about whether Junebug would be getting many presents since she didn't have any parents to buy her anything. That thought bugged me a lot too, so we went out and got her a bottle of lotion and a bottle of perfume from one of those places in the mall that the teens down here like a whole lot. If it had been up to VanGoghGirl, we'd have spent our entire budget on Junebug. I was really glad that we got Junebug a present but doing it also made me feel kind of crummy inside because I know this child needs so much more than that.

Last night, VanGoghGirl said that she and Junebug were talking and she asked my daughter what her last name was again. When VanGoghGirl told her, Junebug said her first name out loud along with my daughter's last name, then she said, "Hmm, that sounds sort of weird together but I guess I could get used to it." Well, I almost broke down in front of my daughter when she told me about this conversation. I mean, this girl REALLY wants to be adopted.

I grew up with kids who were in state's custody. By the time they reach five years old, they aren't cute little babies anymore, so most of the couples who feel as if they need to experience that stage with the child won't even consider one that's older than this. When you're a teenager like Junebug, the chances of getting adopted are so slim that the majority of them will just end up aging out of the system without ever finding a family. If that weren't bleak enough, on top of everything else, Junebug is African-American. I can't even begin to explain how much that works against a child seeking to be adopted.

Over the years, I've interacted with white couples who'd pay upwards of $20,000 to adopt a child from overseas before they'd adopt one of the minority kids in their own country. They'd even adopt a child from Africa before they'd adopt an African-American. Now tell me that isn't all about exoticizing people of color!

God knows I wish I could adopt Junebug today. It's just that the shitty system we have makes it so damned difficult for families like mine. Right now, the state has to pay for Junebug's health care, food, clothing (including their super expensive school uniforms), and housing costs. If someone or some family could provide an environment that is at least as safe as a group home, wouldn't it be in the state's best interests to let those individuals or families assume some of those costs and give the child the opportunity to grow up outside of an institution? It would definitely be in the child's best interests.

If the state allows me to keep VanGoghGirl in my custody even though I might eventually die of cancer, why would it have a problem with allowing me to adopt a child because I could die? Any parent could die, no matter how healthy they may appear to be at a given point in time.

This whole issue makes me so unbelievably bitter. I'm at a loss for words at this point.

FDA Ruling and the Cure Culture

Cancer Drug Ruling Will Have Wide Impact
At issue is how the agency judges the effectiveness of cancer treatments. Traditionally, FDA only approved cancer drugs that extended the lifespan of patients. However, in recent years companies have studied alternate measures of a drug's effectiveness. One of the most controversial measures is so-called progression-free survival, or how long the drug halts the spread of cancer.
When you have a cancer that is currently incurable, it makes sense for the means for determining the effectiveness of treatment to be different from how you'd view for those who do have curable cases. There are advantages to having your tumor remain small even if it doesn't increase your lifespan. I breathe better now that I have less tumorous tissue in my body. My heart doesn't skip beats as much as it did when my tumor was larger. That's worth something to me. It makes it a lot easier for me to enjoy the life I have if I can breathe and be active.

The FDA needs to get beyond the cure culture that exists in this country. They are doing the PWD communities a disservice by trying to enforce a one-size-fits-all standard. Those of us who will have our disabilities for as long as we live deserve to have our needs addressed, too. This cure culture issue also came to mind when I read this article about Hepatitis C.

Hepatitis C Cures Now Common
Hepatitis C is caused by the hepatitis C virus, which is transmitted from contact with infected blood. HCV infection is the leading cause of cirrhosis, liver cancer, and liver transplants in the United States. Roughly 4 million Americans are infected, but only about a quarter of them know they have the virus, hepatitis treatment expert John Vierling, MD, says.
“We have to start identifying infected people earlier so they can be treated earlier,” he says. “It is true that about half of patients can be cured with the treatments available now.”
I recently read something that claimed Hepatitis causes more deaths than AIDS. However, you don't hear as much about it in the news. Some people feel that it's inappropriate to use the word cure with regards to Hepatitis C even when the virus is at undetectable levels. I have mixed feelings about this. Since I don't have hepatitis, all I can do is relate it, as best as I can, to my own situation.

With cancer, people will call someone cured if they are in remission but, as many people have experienced, remission isn't necessarily a permanent state. Now, the thing is, if you have been in remission and had your cancer "come back", it really means that it never left. Sure, it may have been reduced to undetectable levels--and, by the way, there are plenty of things that can affect whether a cancer is detectable (e.g. type or location of the cancer). However, that doesn't mean your body is truly free of cancer cells and as long as you have some cancer cells in there, you can develop enough of them for it to be detectable again. So, can we ever be sure that we've cured someone of their disease? Well, it depends on how we define the word "cure". Personally, I'd rather that we eliminated the obsession with cures altogether. If a person is able to enjoy their life, regardless of what they may or may not have in their body, then does it really matter whether that person is cured?

Wednesday, February 20, 2008

Steve Novick: A PWD Senatorial Candidate With A Strong Left Hook!

Via Brainhell's blog

Hurray for crip power! Steve Novick is a person with a disability who is running for office in the Oregon senatorial race. His platform is nearly the same as the one that John Edwards ran on: leaving Iraq, lowering the National Debt, and providing all citizens with health insurance. However, what makes him really stand out in this race is the way he's proudly showing off his disabilities and using them to highlight why he thinks he'd be a good representative for the people in his state.

Recently, Novick launched a series of campaign advertisements that I think are truly awesome in the creativity department. Take a look at his "A Beer With Steve" ad


and "To Tell The Truth".

Geek Girl Part IX: How to Make Instant Hot Ice

I usually prefer videos that show you how to make stuff using chemicals you have at home. This video says that you can buy sodium acetate online but that really isn't necessary. You can make it at home.

Monday, February 18, 2008

Why Not Vote AND Work for Change in Other Ways?

In a discussion about politics, I told someone about how I don't really see there being any reason for me to vote for either Obama or Clinton. Yeah, I know it's an unpopular stance but it's one that I've become more and more adamant about in the past few years. Anyway, in response to what I said, a woman asked me why I didn't just vote and work for change in other ways.

The idea of doing both makes sense, if the situation was just that voting was a benign act. However, in my view, it isn't. You see, every vote that's cast lends credibility to the system; it says that we accept the system as legitimate. After all, if millions of Americans have voted, then it's harder to prove that most people would prefer some other particular system. I mean, we have a system where less than half of the electorate actually votes. Still, if someone wanted to change the power structure, at the very least, they'd have to find a way to prove that more than 100 million people (approximate number of voters in 2004 presidential election) also want these same changes. Otherwise, it's easy to argue that more people would prefer for things to stay the way they are.

Also, as I see it, when politicians use their office to engage in some sort of corruption, the people who voted for them are, at least, partially responsible for what occurs because it was their actions that put the politician in a position to do what they did. Unless I have some way of knowing that a candidate isn't going to use his office to engage in unethical behaviors, then I don't really want to help put him in a position where he may do just that. Cooperation is only subversive if you're not cooperating with the system that's causing the problems.

Lastly, there's the issue of finite resources. I only have so much time to devote to political activities. I could campaign and vote for a particular politician in the hopes that he might address a few of the causes that I believe in OR I could work for to change the world myself, devoting the amount of time for each cause in a manner that is commensurate with how important it is to me. I think that my time is better spent doing the work myself because that's the only way I can really know what does and doesn't work and what needs to be done to effect progress.

Flu Away!

This damned flu is still kicking our assets around here. The German caught it and now VanGoghGirl has it, too. You can bet your bottom dollar that I won't forget to get my flu shot next year!

Thursday, February 14, 2008

Yahoo! I've Been Nominated

for The Canadian F-Word Blog Awards. I'm always surprised whenever I find out that someone here likes my blog enough to submit it for something. I'm smiling from ear to ear, right now. What a nice pick-me-up!


Tuesday, February 12, 2008

Cremation or Donation

I'm a big believer in donating one's body to science. My grandfather had both lung and throat cancer. Throughout his life he'd been a lover of science, so it was easy to respect his written wish to have his body donated. Nothing else would have seemed quite right to me, anyway. However, lots of people in my family were really upset when they found out that he'd already made these arrangements ahead of time which meant they couldn't stop Tulane from taking his body straight from my grandparent's house when he died. At the time, my mom certainly didn't approve.

I'm partial to cremation because I don't want my family wasting a bunch of money on an elaborate coffin and funerary flower displays and all of that fancy schmancy stuff. Okay, let me be honest. The biggest reason why I want to be cremated is strictly based on vanity. I HATE the way most morticians put make-up on the corpses. I mean, I understand that most of them aren't trained make-up artists but do they have to make you look like a painted-faced clown? People will be seeing my body for the last time and I have no desire for them to walk away with that sight stuck in their head for all eternity.

My parents have also let us know that they've made arrangements to be cremated. When I visited them in Dallas last year, they made sure to tell me that the urns they've purchased were in the guest room closet so that I'd know where to retrieve them from when they passed away. It was weird because they were just so dern upbeat about it. I was a bit creeped out for the rest of my visit because that's the room I had to sleep in. Knowing that the containers my parents planned to be put in were no more than three or four feet from where I was sleeping made me a wee bit uneasy.

However, lately, I have been thinking about whether or not it would be right for me to be cremated. I mean, maybe it would be a wasteful thing to do. My cancer is very rare. Most med school students won't ever see a tumor like mine. Having my body burned means that even fewer of them will get this opportunity. Heck, maybe getting a look at what it's done to my body will even help doctors figure out better ways of treating chondrosarcoma in the future.

Monday, February 11, 2008

Overheard Elsewhere

"Fuck the revolution.
It's not coming, and it never gave anyone shit."
by Trinity on Oh, Shut up, You just need saving!

Now if we are the same women from the same people in this barred room, we never notice it. That stuff stays wherever it is. It does not show up until somebody walks into the room who happens to be a woman but really is also somebody else. And then out comes who we really are. And at that point you are not a woman. You are Black or you are Chicana or you are Disabled or you are Racist or you are White. The fact that you are a woman is not important at all and it is not the governing factor to your existence at that moment. I am now talking about bigotry and everybody’s got it. I am talking about turning the century with some principles intact. Today wherever women gather together it is not necessarily nurturing. It is coalition building. And if you feel the strain, you may be doing some good work. (Applause) So don’t come to no women’s festival looking for comfort unless you brought it in your little tent. (Laughter) And then if you bring it in your tent don’t be inviting everybody in because everybody ain’t your company, and then you won’t be able to stand the festival. Am I confusing you? Yes, I am. If coalition is so bad, and so terrible, and so uncomfortable, why is it necessary? That’s what you’re asking. Because the barred rooms will not be allowed to exist. They will all be wiped out. That is the plan that we now have in front of us.
by Bernice Johnson Reagon on Coalition Politics: Turning the Century

As it's commonly used, "PC" is a deliberately imprecise expression (just try finding or writing a terse, precise definition) because its objective isn't to communicate a substantive idea, but simply to sneer and snivel about the linguistic and cultural burdens of treating all people with the respect and sensitivity with which they wish to be treated. Thus, the Herculean effort required to call me "Asian American" rather than "chink" is seen as a concession to "the PC police", an unsettling infringement on the free-wheeling conversation of, I suppose, "non-chinks". Having to refer to black folks as "African Americans" rather than various historically-prevalent epithets surely strikes some red-blooded blue-balled white-men as a form of cultural oppression. Having to refer to "women" rather than "bitches" lays a violent buzzkill on the bar-room banter of men preoccupied with beating on their chests and off other body parts.
by Kai Chang on The Greatest Cliché: The Unexamined Propaganda of "Political Correctness"

My Stool Sample Adventure Part I: Oh S**t, They Want WHAT?!

Before I started this blog, I decided that I was going to be brutally honest about my entire cancer experience. I wanted to record exactly what it was like for me so that maybe it would be a bit easier for other people with disabilities to feel comfortable talking about their experiences, too. Well, today is one of those days where doing this isn't exactly easy for me. I decided to write about this particular topic in depth and I'm not even sure why I feel like it's important for me to do so but, in my heart, I really think it is.

A few days ago, I wrote about my latest doctor's visit. While I was there, my doctor told me that she wanted a stool sample. She said that I could give up the goods now or do it in the comfort of my home and bring it back to the hospital. Unfortunately, I always get a "nervous stomach" whenever it's time for me to go to the doctor. That means I'd already emptied my bowels shortly before my conversation with her, so I went down to the lab and picked up the little brown paper bag and brought it home with me.

I could pretend as if I'm totally cool with all of this stuff but I'd be lying if I didn't admit that the idea of someone, literally, examining my shit is pretty damned embarrassing. I mean, to each his own and all but I prefer to stay as far away from poop--everybody's poop--as I can and it's hard for me to really believe that someone could do this and not be disgusted.

I brought the bag home and promptly cast it aside out of sight. I knew I was going to have to deal with it but I didn't feel up to doing it yet. A couple of days passed and my cold symptoms weren't getting any better, so The German made an appointment for me to see my doctor again. That meant I couldn't put off dealing with the stool sample issue. That morning before my appointment, while The German was still sleeping, I finally brought the brown paper bag into the bathroom to see what I had to do with it.

My mom once had to provide a stool sample and she showed me the little packet they gave her to use. It looked like this:
For two days in a row, you use the little sticks they provide and put a tiny dab of poop on the card and then you bring it back to your doctor. Okay, that's not so bad, right? You poop into the toilet as usual, poke it with a stick, touch the card with it and you're done.

That's what I thought I was going to have to do and even that felt like a pretty daunting task to me. However, when I took a look at the instructions on the bag it said,

Write your name (last, first) on the lid of the specimen cup.
Return specimen container in the bag given. This bag has pertinent information needed by the laboratory.
Do not fill the container. We need about 1/4 cup of stool.
If you are given more than one container, do not collect two on the same day.
Return stools within 24 hours of collection.
Do not take oil purgative
Return stools Monday-Friday, 7:30-4:30
STOOL SPECIMENS MUST BE RETURNED TO THE LAB NO LATER THAN 4:30PM!


Yeah, that's right. I shit you not! They wanted a fourth of a cup! That's a helluvalot more than the two little dabs that my mom had to provide for her test. I looked inside of the bag and there was a cup like this

and a stick like this


Free Image Hosting at www.ImageShack.us

(sans any yummy chocolate fudge on the end)

I wasn't sure exactly how I was supposed to use the popsicle stick or whether it was okay for me to let the poop fall into the toilet and then collect it, so all I could think of was to hold the cup under my bottom while I sat on the commode and do a direct drop. Sheesh! You'd think they would have provided more detailed instructions. I mean, it's not as if the average person has a lot of experience with doing this sort of thing.

I really wasn't even sure whether I provided the right amount. The little container didn't even have any measurement marks on the side of it, so I wound up having to guesstimate. After that, I placed the little container back in the paper bag and put it away where no one would happen to see it if they came in the bathroom before I left. Fortunately, I have a private bathroom connected to my room, so it doesn't get a lot of foot traffic unless we have a lot of visitors over.

That morning, I brought the bag and its contents with me to the hospital. We were late for the appointment so The German offered to take the bag down to the lab while I went up to the doctor's office. I was really grateful for that.

You know, he's not the least bit grossed out by anything he's had to do for my body. I've had partners who weren't able to do that. Some people just aren't going to be willing to wet the stitches on your perineum or clean off the fluid coming from the healing holes in your chest. I mean, when I say it like that, does it sound like anything someone would want to do? Still, I think that anyone who says they love you should be willing to do what it takes to help you live your life. Sometimes that means supporting your partner while they go to school. Sometimes it means cleaning bedpans or colostomy bags. But you know what? That's real life! If you're not up for that, then you're not up for being involved with another person because the stuff that's happened to me could happen to anyone. I mean that. Anyone.

So, if you're grossed out by what I've written here, maybe you should take this opportunity to engage in a little introspection. Figure out what real love is. It doesn't have shit to do with Valentine's Day or walks in the park or mind-blowing orgasms. It's all about what you are willing to do with life deals you unexpected blows, when (no pun intended) the shit hits the fan. Are you going to do what it takes or are you going to fall apart when the person you love needs your support and acceptance the most?

Friday, February 08, 2008

Reclaiming La Chola

BrownFemiPower has a post explaining why she re-named her Radical Women of Color blog to La Chola. It was pretty interesting to me to hear about the sort of responses that she's received since then. Some have questioned whether she's actually tough enough to deserve(?) to call herself a chola. Others have insinuated that she's not--I don't know, culturally authentic?--enough to call herself that. It's really quite baffling. I have to wonder, how much did these self-appointed judges really know her in the first place?

It's been a bajillion years since she and I first conversed but, if anything, I'd say that she has become LESS tame over the years than when she first started out blogging. The Brownfemipower that I knew was passionate and smart and inquisitive but I don't think she had found her true voice, at least not to the extent that she has now. I think that if I spoke to her now the way that I did then, I'd get checked quicker than a food stamp balance on the first of the month. Seriously.

When we first exchanged e-mails, it was to discuss some really disappointing drama between women in the people of color blogosphere. I've held on to those messages that we sent back and forth to each other and I went back and read them again tonight. The difference between that BFP and the one on La Chola is like night and day. Her tremendously-caring heart is apparent in both but her strength is so much more apparent on her blog now; she used to keep it so damned reserved! I'm just glad that the entire world now gets to see the warrior woman that has always been there smoldering between the lines of her posts. I mean, I was really surprised when I re-read those messages we exchanged and I saw this e-mail from her dated February 14, 2006:

ps I was also wondering about your comment that people think you got cancer because of "x"--usually some thing to do with your behavior.

I don't agree with that sentiment at all, but I have been exploring the idea of state created disability...that is the children who have been exposed to agent orange, the children exposed to nuclear waste, the children exposed to dioxins, waste, poison and other enviornmental filth that the state specifically creates or edorses the creation of.

do you think that the disability movement has the potential to create an alliance between disabled folks and those suing for reperations (in the case of agent orange?)

And how can the fine line be drawn between valuing disability while at the same time recognizing that the state has an instrumental role in creating disability?

Yeah, that was almost exactly TWO YEARS AGO. Now check out this post I wrote the other day:

February 3, 2008

Society really is creating a disability class. It's kind of difficult for me to articulate the difference between the disability community and the disability class. I don't have a problem with an expanding disability community. In fact, I really want it to expand because I think that a lot of people could benefit by becoming a part of our community. However, what I do not want is for people to become a part of the class of individuals who are disabled by society because they were subjected to inhumane conditions.

After that, I thought about how there's all this talk about how much "illegals" are supposedly costing "us" (because, of course, they are not a part of "us" even though they live and work and die here, too) in health care benefits. Still, there's nary a mention of how much the exploitation of workers is causing many of these people to have to seek medical care in our health system. Who's going to calculate that?
Even though La Chola does not identify herself as a person with disabilities, she was able to think critically about issues that, in spite of being disabled for many years, I am just starting to be able to consider. And what was it that made me think about this a few days ago? Take a guess! It was one of her posts. Yeah, so anyway, my point is, if you're one of the people who's surprised about the name-change, it's probably because you just didn't know her as well as you assumed you did.

Now, while we're talking about cholas...

I remember when I kicked it in L.A. (not La., where I am from) for awhile back in the day. My very best friend/hostess/roommate was a chola to her heart.

We first met when she had moved down to New Orleans for a little while to stay with her grandparents. She decided that we would be friends. She used to hang out with my brothers and their friends, so I'd seen her around a few times but we never really kicked it or held any memorable conversations with each other. One day she came over to my house (she worked down the street from where I lived) and told me that she and I were going to be friends.

This was shortly after VanGoghGirl was born and I was homebound at the time; I wasn't really healthy enough to be able to get out and do things like hanging out and going to the movies or parties or anything like that. That meant that I was always left out when the kids in our social sphere got together to have some fun. She changed that. She'd come and hang out with me on the weekends and, when she and the other kids went out, she'd drag them all over to my house afterwards to hang out until the morning hours. If it hadn't been for her, I'd have been so isolated from everyone my age. She made sure that didn't happen.

On the night when I had to be hospitalized in the middle of the night because of my bad reaction to Prednisone, she was the first person who realized that something was wrong and she had already hitched a ride to my house before my mom and brothers figured out that I really did need to get checked out. She rode with me and my family to Charity hospital and sat there with me for the hours that it took before they processed me.

She is one of the fiercest women I've ever met. She taught me all sorts of things like how to carry a razor between my tongue and the roof of my mouth* and how to shave off my eyebrows (and then draw them back in with a make-up pencil) and where to buy the perfect shade of "red-black-red" lipstick. She took me to the mall to get my nose pierced and almost talked me into getting my first tattoo. She wasn't a part of a gang but you couldn't pay her to wear ANYTHING red. She drank and smoked and cussed like a sailor and she even taught my toddler-aged daughter to tell people to kiss her butt.

By the time I moved back to Louisiana, I was wearing my flip-flops with socks and my muscle shirts with no bra. Hell, I still wear my muscle shirts without a bra to this day. It just doesn't feel right any other way.

La Chola is powerful.
La Chola is untamed.
La Chola laughs out loud.
La Chola says, "Fuck capitalism!"
La Chola has no need for a marriage license to sanction her relationships.
La Chola believes in a lot of things but doesn't really bother with churches.
La Chola is hella smart.
La Chola has been to jail but she did what was needed to care for her family.
La Chola's kids can understand Spanish even though they go to a güero daycare center.
La Chola has always had my back.
La Chola doesn't wait for introductions.
La Chola is proud.
La Chola loves la raza.
La Chola has already been reclaimed.

-----------------------------------------------------------------
*If you're going to try this, make sure you use the single-side blades that are really cheap because they are more flexible than the more expensive ones. Be sure to face the blade in the opposite direction of your throat. Better yet, just don't try this or try not to be any place where you might feel like you need to try it.

Monday, February 04, 2008

Message for the Living

I found this quote shortly after my cancer diagnosis and it has been my motto for life ever since. This, my friends, is what I plan to focus on when it comes time for my final minutes on earth.


"Life should NOT be a journey to the grave
with the intention of arriving safely
in an attractive and well preserved body,
but rather to skid in sideways, Champagne in one hand
--strawberries in the other, body thoroughly used up,
totally worn out and screaming WOO HOO - What a Ride!"




(This post is dedicated to BrainHell.)
Allah yerhamhoo

Sunday, February 03, 2008

BrainHell has left the building. R.I.P., my friend.




BrainHell
I went to his blog today and found out that he died last night at 8:40pm. What can I say? My feeling is that this beautiful, beautiful person is beginning his next journey and I am sure that it will greater than I could ever imagine or hope for him. BrainHell might have scoffed at sentiments like that, though. He wasn't religious at all. In fact, he was an atheist, and he was completely comfortable being that way. I remember all the times on his blog we all made jokes about The Church of the Flying Spaghetti Monster. He was different from me but I just felt so attached to him. We all were, even though our lives were so different from each other's and from his. I can't imagine him being any way other than how he was.

I don't even remember how I found his blog. At first, I was really afraid to say anything because he wasn't the kind of person to suffer fools gladly. The man had a brilliant mind (His chess skills were unmatched among those of us who posted there). He was really compassionate though. He made a point of sending me an e-mail thanking me for my comments and telling me that he enjoyed me reading his blog. I've held onto it for over a year now. If you were familiar with him, if you saw how little use he had for flattery (giving or receiving it), then you'd understand why his words were/are so special to me.

It's going to take some time for me to really come to grips with the loss of this member of the disability blogosphere.

Edit:

Oh dear, it seems I've messed up a bit here. Jansenist was kind enough to point out to me how wrong I was with regards to BrainHell's beliefs. He actually wasn't an atheist at all. I apologize for the mistake.

Immigration in America: Creating a Disability Class

Today I was going through La Chola's archives and searching what she had to say according to topic. There was a post from back in November that I wanted to find because it had been on my mind. It was about "'privileged' illegal aliens". She quoted from an action alert put out by the United Farm Workers where an undocumented agricultural worker described the conditions where he worked.

“I have been working for Starrh and Starrh for five years”, Alejandro Gil told us. “The working conditions are awful. We are exposed to a lot of dust and we do not have any protection. In the last two or three days, I have been feeling a pain in my chest and my back when I breathe…The owner’s brother-in-law always puts pressure on workers. He wants more production. The brother-in-law always carries a gun on his waist to scare workers.”

“We never had bathrooms, fresh water or water to wash our hands. Sometimes we do not get any breaks. They put a lot of pressure on us to work faster. When I helped them packing hay, I worked up to 16 hours without breaks.” said Gerardo Negrete. “I am a sprayer and they do not give us what we need to protect ourselves from the chemicals. I have sprayed [pesticide] without gloves, masks or overalls. They only give those to us when we are close to roads where maybe some inspectors can see us…The foremen make fun of us for not having the protection we need.”


After reading this, I sat down and did some thinking about how stereotypes about immigrants are perpetuated in this society. Alejandro Gil, is only one person but his experiences are representative of the conditions that many--dare I say, most--undocumented workers are subjected to in the agricultural industrial complex. I can't stop thinking about the long-term effects of being subjected to such a toxic environment.

Society really is creating a disability class. It's kind of difficult for me to articulate the difference between the disability community and the disability class. I don't have a problem with an expanding disability community. In fact, I really want it to expand because I think that a lot of people could benefit by becoming a part of our community. However, what I do not want is for people to become a part of the class of individuals who are disabled by society because they were subjected to inhumane conditions.

After that, I thought about how there's all this talk about how much "illegals" are supposedly costing "us" (because, of course, they are not a part of "us" even though they live and work and die here, too) in health care benefits. Still, there's nary a mention of how much the exploitation of workers is causing many of these people to have to seek medical care in our health system. Who's going to calculate that?