Sunday, December 4, 2011

Where is the love?

Ryan White (December 6, 1971 – April 8, 1990)
 "Where is the love 
you said was mine o' mine
'til the end of time?
Was it just a lie?
Where is the love?"

Roberta Flack and Donny Hathaway singing "Where is the Love?"

_____________________________________________
This world is crazy. For real. Like real, real crazy.

I was trying to decide yesterday. Go there? Or not even go there? Meh. I decide to go there.

Here is the there.

You may or may not have heard this in the news, but I'm a nerdy doctor at a public hospital so this grabbed my attention. Alright, so check it.  In Pennsylvania, there's this not-for-profit school in Hershey that the chocolate bar mogul started back in the day. Anyways, they have a state of the art facility and bring kids who are academically able yet financially unable into their building for a chance at movin' on up Jefferson's style.

You with me so far? Cool.

Alright. So this school does good things and I am not disputing that. In addition to having all these bells and whistles for these pre-K through twelfth grade kids to partake in, they house them, too. Yep. It's a boarding school. And although I have never considered boarding school for my kids, on one day when I was super bored, I looked up how much they cost--and trust me, they cost a GRIP.  So, yeah. The folks behind this school waive that GRIP and bring deserving children there for a first-rate education.

That's cool, right?

Well. Here's what went down recently that got this boarding school in Hershey, Pennsylvania on my radar. This thirteen year-old boy who happens to be a scholar athlete and all around great kid (from what I read) applied to this school.  His mama, like a lot of mamas, is a little light in her pockets and surely appreciated the possibility of seeing her hard-working boy have the great fortune of going to this elite boarding school. On paper? He was a good fit.  Great student. Even an athlete. And yes, there was need.

But.

One small issue.  He is HIV positive.  And because of that little inconvenient truth, this chance-giving school ix-nayed his acceptance. They didn't even lie about it either. They flat out kept it real--which you must give them props for--and said that they could not allow him in their school because he posed a "direct threat" to the other 1,800 students in their student population.

Wait, huh?

Yeah. He got denied entry into a school in 2011 because he is HIV positive.

Well. Turns out that's not really a cool (or legal) thing to do. So this kid and his mama decided that they'd sue this school. And they filed their law suit this past Wednesday--just in time for World AIDS Day.

But the school? Oh they stood their ground. Pretty much saying that because they are a boarding school and a "unique learning environment" they can't take the chance, albeit a remote one, of putting others at risk. Yep.  The superintendent even got on CNN and stood the school's ground even more. Hell no. He won't go.

Did I mention? This kid takes antiretroviral drugs, too. In other words, he's under a doctor's care and does what he's supposed to do.  He's in great health and is just trying to do his thing to get ahead in this world.

But that's just too bad. Because if it's up to them, he ain't gonna be doing his thing there. Not on their watch. Around their kids. God forbid he accidentally bumps one of them in the hallway or the bathroom. Oh helllls naw.

So the potential concern is as follows--at least this is what the superintendent said on CNN.  She said that the issue is that there is some chance that at some point this boy might have sex with one of those one thousand eight hundred and something other kids and just maybe when he does, he will not use a condom and in turn infect them with his poisonous bodily fluids. Oh, and I almost forgot. He'd need to say to hell with his HIV medications to make this already remote possibility even worth discussing (and even then it would still sound crazy.)

Can I just state that the chances of one of the eighteen hundred kids in that school getting hurt, disabled or killed in an automobile accident are FAR greater than the individual risk they have of this (hello? responsible!) child exposing them to HIV? And surely--SURELY--they transport those students in cars or buses don't they? Uhhhh, okay. I guess the risk has to be socially acceptable.

Okay.

I at least give them credit for publicly recognizing that sexual intercourse is the most common way people get HIV in the world. Hell, at least they didn't publicly go running from the cafeteria screaming that he might give their forks and knives the cooties.

Sigh.

Now. Let me get on my nerdy soapbox and say just a couple of nerdy academic things that some folks reading this may or may not know:

1.  People who take antiretrovirals are less likely to transmit the virus. Yep. A big ol' study proved it. Gave people treatment and turned them loose with their HIV negative partners. The ones who were on meds were NINETY-SIX plus percent less likely to give it to their partners. Yep. The HPTN 052 study, in case you just needed to Google it.

2.  People who know they are HIV positive modify their behaviors. Yep. Turns out that if you KNOW you have HIV, you are more likely to protect others. Imagine that.

3.  (In case they didn't know.) You can't get HIV from kissing, hugging, sharing forks or any other casual contact. Oh and what about a nosebleed? Well, I guess if he stood over someone with blood pouring from his nose into their openly exposed bleeding wound, then yeah. Perhaps there could be risk.

4.  Saliva has no significant amount of HIV in it. This means that when this kid is ready he (and any other HIV positive person) can get their full French-kiss on with no concerns. Yep. Sure can.

5. Oh, and there are, like, 250, 000 plus people in the U.S. who are HIV positive but don't even know it. Which means even if you think you don't know anyone with HIV, chances are you're wrong in that assumption.


Yep. Those are the facts. Straight from a reputable source--a medicine nerd who has worked at a public hospital for over a decade with all sorts of "communicable diseases" -- including HIV. Which also happens to be in the same city as the Center for doggone DISEASE CONTROL and PREVENTION. Yep.

But so much for all of that. This is factual information and obviously this was not a decision made based upon that. Instead, it was based upon fear. I think we have learned over many, many years that facts and logic don't readily overcome fear. At all. And that fear is a powerful driver for some of the stupidest decisions of all time.

Alright (imagine me rolling neck and shadow boxing) I'm getting loose here, y'all.

And since I'm all the way loose (insert knuckle cracking and more shadow boxing here) why don't I just "unpack" another part of this story.

First let me digress and give my friend and fellow Grady doctor David M. credit for me using that term "unpack." He's a qualitative researcher that happens to be an HIV doctor, too--and he tells me that when researchers have a variable that is probably affecting a clinical outcome, that that variable needs to get investigated. . .or "unpacked" . . . .at some point.

Oh, and did I mention? He's young, gifted and black.


Well. Let me just unpack the fact that this 13 year-old HIV infected boy just happens to be African-American.

Gasp!

Yep. I said it. And consider it officially "unpacked."

Now. Let's just all close our eyes and imagine this deserving student as an angelic little doe-eyed thirteen year-old girl with a porcelain complexion and eyes like pools of cerulean water. Do you think this might change how this situation was viewed at all? Might it alter the level of threat from bright red down to a cool shade of yellow?

Or.

Would there have even been a case to be had at all?

Hmmm. Don't answer that. Let's just agree that it sucks that we live in a world where the answer to this is questionable. But since I'm loose, I'll just call it just like I see it. And here's how I see it. I sure do think that the amount of empathy felt for this child is somehow affected by his race. And the belief that he will run all over this campus spewing forth blood and semen everywhere he goes is, I think, somehow shaped by somebody's perception of people--especially male people--who look like him.

Perhaps maybe even unknowingly this is the deal. I don't even want to imagine that it is totally egregious and tied into some warped view of all black males as irresponsible hypersexual animals. Because that is exactly what he'd have to be to cause even a remote amount of plausible risk by having him in that school. Even if he's an honor student.

It's an ugly variable to imagine, isn't it? But a variable that must be unpacked all the same.

Alright, I know that part was getting uncomfortable so I'll pack it up and move on.

Ryan White was this really brave kid who got HIV from a factor 8 blood product transfusion needed for treatment of his hereditary hemophilia. When he was diagnosed in 1984, he was given 6 months to live. He was expelled from his Indiana middle school because he was HIV positive. Ryan was pretty much a courageous bad ass and he fought this decision in a very public legal battle. He even got some high profile people in his corner like Michael Jackson and Elton John. All that press changed him overnight from an unknown Joe Schmoe (literally) from Kokomo to the poster child for HIV and AIDS. Oh and Ryan and his six months? He lived another five years. Mmm hmm. He showed them.

But that was in 1984. And HIV was poorly understood then.  

Then, right?

Um, yeah.

See, here's the thing. There are some times when someone having HIV poses a risk. Like, say. . . .you are sexual partners with someone who has HIV and you don't know. Then hells yeah, you need to know and be able to protect yourself because there's a sho' nuff direct threat. But this? This?  Come on, man.

What bothers me the most about this is that it almost doesn't seem true. I liken this to those instances when I, a black person, think that most people are cool with black folks and how far they've come--and then something really crazy happens like Kramer from Seinfeld saying the n-word repetitively or someone hanging a noose from a tree in a Louisiana high school that says. . . uhh. . . hello? Or even when Mel Gibson had that cringe-worthy anti-Semitic rant. See? Things like that make me say:

"Damn. And here I was thinking things was cool."

Sorry, kids. Some times you just got to unpack the facts.


Now. I know for certain that there are many, many, many people who don't feel that way. That have no issues or qualms about black folks or Jewish folks or Muslim folks or gay folks or any kind of folks for that matter. And I know for certain that a lot of y'all reading this love all folks. (Unless, of course, you're Ms. Moon and we're referring to that Herman Cain--wink, wink.) Otherwise. . . . I know, I know. Not you.

But.

Everybody isn't you. I made the mistake of reading the ABC and CNN message boards on this topic. Looking to see what other American people had to say about this whole "sitch-i-ay-shun" (as my dad says). And OH, they had PUH-LENTY to say on it. Well. It turns out that a whooooole lot of people were one hundred percent KOOL and the GANG with that school's decision to say no way. So KOOL, in fact, that one of them even sent me a scathing email telling me how wrong I was to "put peoples' children at risk" after I spoke about it on television. (At least I didn't unpack the race variable!) Okay, okay. . . . I'll be the first to admit that it wasn't too hard to see where I stood on the subject. But I really, really wanted to believe that most people think this is as preposterous as I do. (I, at least, know for sure that there is a fully educated lawyer-dude somewhere in Mississippi that officially does not.)

Arrrgggh!

Where's the empathy, man? Where is the love? To hell with the fact that the boy got HIV in utero and not even because of something he accidentally or irresponsibly did. And to hell with the fact that his life expectancy is EXCELLENT.  Matter of fact, a lot points to the fact that many with HIV who are under care like he is, live long enough to die from causes other than HIV. It's fine if that's the facts. So long as he ain't in the same boarding school as THEIR kids.

Uhhh, yeah.  

Now I bet Ryan White is rolling over in his 1990 grave saying:

"Damn. And here I was thinking things was cool."


Sigh.

Tuesday, December 6, 2011 would have been Ryan White's 40th birthday.  Had he been diagnosed in 2011 instead of 1984, he would have lived to celebrate it. Hmmph. Some celebration.

I'm interested to hear your thoughts. Please. Weigh in.

***
Shout out to my friends and fellow Grady peeps who have dedicated their careers to making sure that the Ryan Whites-- and the Ryan Blacks -- of the world live to see as many birthdays as possible. Thank you, thank you, thank you for all that you do.

Grady doctor, friend, and all around wonderful person--Wendy A.
and of course my other fellow Grady doctor, friend, and rock-star, David M.


***
 And now playing on my mental iPod. . . .The Last Song. . .written by Bennie Taupin and sung by Elton John in memory of one of the bravest souls that ever lived--Ryan White. . . .

. . .and of course, Donny and Roberta asking the question that I'm still wondering, too.

24 comments:

  1. I hadn't heard of this (yet). So sad, It is almost impossible to think that we live in a world where we can't all just be people and accept one another for the DNA we share. Some days I feel that we've come so far and then some days so decidedly NOT. I hope that the legal battle and media continue to draw attention to this case. Thank you for posting and unpacking all that truth. "preciate you" Grady Doctor!

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  2. I think your explanation about antiretroviral drugs is an important one. There are many, many people who think Magic Johnson doesn't have full-blown AIDS because of some 'miracle.' A lot of people would rather react from emotion than the facts, but for an institution to do it is unsettling. Are they saying there should be separate schools for HIV positive children?

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  3. Spice Girl -- Thanks for your thoughts. And for letting me unpack.

    Stace -- Heck if I know. I think they are saying, "You ain't got to go home, but you got to get the hell up outta here."

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  4. Oh you unpacked it alright. This should be required reading for everyone. I am a little embarrassed to admit that I started sobbing halfway through reading. For the the boy denied admittance and for the Ryan Whites and Ryan Blacks of this world. I watched with horror the CNN interview.

    Thank you for your voice, you are amazing.

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  5. It's 2011. Whoda thunk there would be a worldwide shortage of dignity, respect and compassion?

    Good luck to this young man, even though he may not need it. He sounds like he has all the stuff to change the world. It's nice, too, to see intelligent people taking up for him.

    Maybe if we all speak up when crap like this happens, we can finally put an end to the small-minded tethers holding us all back.

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  6. This story escaped me and I am livid. I call bullshit. I thought things were different. I thought that after Ryan we had learned a few things. I am tired of thinking the world really is crazy and we are moving back into the dark ages of ignorance and fear.

    I was in Indianapolis the night Ryan died, at Farm Aid, and Elton came by to sing Candle in the Wind for him. It is one of the most memorable nights of my life. I was there with dear friends, one of whom would die within a few years from AIDS, estranged from his parents who shunned him for being gay. So I have this bile taste in my mouth from reading your post, because of the facts, but an even warmer spot in my heart for you, because you just keep fighting the good fight and spreading the word.
    I'll be watching for news of this story, and why isn't it more in the news???
    xo

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  7. Call the M. Effer's out, SisterDoctorMamaWoman! Call them OUT! Ignorance is NOT bliss and it is NOT an excuse and in this case it is inexcusable and BS because anyone, ANY person in this world can know the truth about HIV and how it is transmitted.
    Speak the truth and fear no man!
    That's something I try to live by and no, I do not completely succeed but sometimes, you just have to lean on that one and do it.
    And you have.
    I'm proud of you and you should unpack any damn time you feel it's necessary because the more we drag this sh*t out in the open and let the light get to it, the better off we'll all be.
    Love...Mary
    (P.S. Did you notice that I bleeped my profanity? Are you proud of me?)

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  8. Sad. Really, really sad. And i hear you about the race issue. Things have changed and yet in life threatening ways, they are as dangerous for black men as they were in the past.

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  9. Oh soul, you make me want to get on my lawyering soapbox fo sho. Hey, y'all, DISCRIMINATION LIKE THIS IS ILLEGAL. And stupid, for all the damn good reasons you gave.

    Bless their souls for making the case and being public because making this fight out in the open will make people talk. Yeah, we'll hear some STUPID-ass shit, but more people will understand more once it's blown over. They will get huge karma points for the good they'll do for others who come along in the same situation.

    This? This is why I became a lawyer.

    Remember in the early 80's when schools had to start becoming accessible? I remember a ramp built and all the kids who'd been hidden in the basement suddenly allowed out to the light of day. Special education lawsuits. And there's still miles to go, but we've come so far. This fits right on in that category, and the blow-up with this will hopefully be resoundingly clear to all them all.

    I def think with the unpacking that it's the combination of race and gender and class, and I'm glad you called it out.

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  10. I had not heard of this yet, and I am shaken - it's hard to describe that feeling (the feeling that something is terribly wrong, or really scary, or both) when all your internal organs seem to have dropped at least 6 inches, your heart is racing, you feel your blood getting cold in your vessels, and your throat is dry.

    No matter how hard I try, I am unable to understand how people can be so cruel, callous, and selfish, especially towards children.

    The worst part is that the older I get the less certain I become that I will see this go away in my lifetime, which tells me I have to work harder. One of the things I have been working on at the hospital is confronting people's biases (in a kind and diplomatic way, but still confronting them head on) and inviting people to look at things from a different perspective. This is especially important with very young med student colleagues, many of whom have never faced any of the difficulties faced by the patients they are seeing and so readily judging.

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  11. The comments sections of stories rarely have useful discourse. They're overtaken by crazies. It's apparently so much easier for people to be scared than to be empathetic and think about how you would feel if your own child had HIV through no fault of his own. Would you want him to be isolated are marginalized because of his medical condition? I agree with StaceSenior. Because if we're creating these HIV-only schools, don't we then have to create these HIV-only workplaces? And were do we stop when creating these segregated societies?

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  12. Confession: I could only get through the first part of your post (ending with your pont #5 on HIV) on first reading, I was mad and wanted to be calmer than I was. I have re-read the entire post now, and cried, and what I failed to say in my previous comment is that I am grateful - honestly, truthfully, unequivocally, joyfully grateful that people like you exist in this world. No matter what evil my and your and other children may have to face in this world, there are still people like you who will be there to love and comfort and support them.

    Thank you for raising this issue, for not being afraid to unpack all the variables, even the really heavy ones, and a thousand thank yous for being who you are.

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  13. I am in complete agreement with all of what you said. As the parent of a child with severe disabilities, the story doesn't surprise me at all -- and comments sections of articles, editorials, etc. are usually the place where the most hateful people hang out and spew their venom. I could show you some amazing stuff about children born disabled that would make your curdling blood turn green. I am grateful that you would shout about this story and help us to shout about it, too. Thank you.

    Also, @Jameil and, I believe, Grady Doctor: Even is this kid's HIV status WAS "his fault" (you both stated that it wasn't his fault), discriminating against him because of disability, disease, skin color, etc. is not only immoral and inhumane, it's illegal.

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  14. Un-freaking-pack it!

    My husband and I are in the beginning stages of international adoption from Africa. The adoption agency is practically falling over themselves because we said we'd be perfectly okay with adopting an HIV+ child.

    We say, "Hey, we live in America, where we are afforded the luxury of readily available antiretrovirals and health care."

    Our family thinks we're nuts. Our friends think we're nuts. First, because we're white and, "Why can't you adopt a white child; if you have to go internationally, there are lots of white kids available." Then it turns into, "Why would you put yourselves and your other kids at risk?!" At risk for what, having a new brother or sister to love? A brother or sister who likely has a death sentence if they stay in a country where medical care is a luxury, and a luxury that most orphans don't have access to?

    I admit that when I first heard of an American family adopting an HIV+ child, I thought I could never do that. But the more we educated ourselves, the more we were open to the idea. I just wish people would take the time to educate themselves before continuing on with their ignorant comments and beliefs...

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  15. RottenMom-- Thanks for feeling me.

    Sgk-- Yeah, whoda thunk it?

    Mel--Gasp! I know this hit home for you. Thank you so much for sharing your experience in Indiana. Wow.

    Sister Moon -- I knew you'd be on my team before I even started typing. And yes, I am proud of you--there wasn't a single F-bomb!

    Kristin -- CNN didn't mention race, but I'm with you--I still think it's a factor here.

    SisterNOLA-- And like Sister Moon, I knew that you, too, would be on my team. I had you on retainer, girl!

    WCD -- You know I always 'preciate you, don't you?

    Jameil -- Those message boards do seem to attract weirdos. For every logical post there are twelve outlandish ones!

    Elizabeth -- First--I knew you'd be on my team, too. You are an amazing warrior mom, and champion for Sophie. The reason I mentioned the "no fault of his own" was because I was thinking that perhaps THAT might get him an extra drop of empathy from somewhere. I'm with you--no matter how he got HIV, this just is terribly unfortunate to see in 2011.

    Courtney-- Wow. What could be more selfless and wonderful? This reminds me of my friend Kris R. whose heart is pure platinum to the very core. That child you adopt--whether that child be HIV positive or negative--awaits a world of good. Stop back by and please, please keep us posted!

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  16. Dang... I'm tripping that Ryan White was my age. He would have been 40 tomorrow... blows my mind.

    I hadn't heard that Elton John song in years... great post, as always.

    xoxo,
    biz

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  17. Dr. Manning - thank you again for such an insightful post. I look around sometimes and I think how far we have come in this world - and then I read stories like this one and realize how completely un-evolved we are. I'm glad that you unpacked all of the reasons behind the school's decision - I'm glad that someone will stand up and say it. We live in a world consumed by fear of what is "different" and we label and make it easy to cast people aside rather than reaching out in understanding. All Muslims are terrorists, all Latinos are here illegally, all African-American men with HIV want to spread their disease around. Really??? Can the people saying that really look in the mirror and tell themselves these generalities with a straight face? I hope and pray for the day when humans have evolved enough to look past their initial fears and see others for who they truly are - not their race, their religion, their financial condition, their HIV status.

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  18. Well I think this sucks and now I'm not going to buy those santa hat kisses that I was going to give to my co-workers. I'm sure that Dove Chocolate has something presentable.

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  19. Oh, I am horrified, and heartbroken. As a teacher myself, I cannot imagine telling a child who WANTS to learn and is MOTIVATED that they can't? No, no ma'am...ain't happening...not on my watch. But apparently, if you are at a rich private school you can do whatever the hell you want to do. But that don't make it right, or accepatble man. I teach at a public school, that is probably 70% African American. A large portion of the students at my school are on free and reduced lunch, which basically means that there isn't much money at home. To think about one of my African American boys, who is motivated and smart and who wants a chance to be denied because of something that isn't their fault? Oh, it makes me mad. Because if I'm being honest, a lot of my kids don't have a family background that has stressed education as the key for them. And, I have seen one too many of my boys lost to the streets/gangs and my girls to pregnancy. And those patterns of poverty keep me up at night. So this? This makes me MAD! Shame on them an their school.

    **As a complete side note, I live in Columbus, GA but have family in the ATL area so whenever I drive past Grady on the highway to visit my peeps, I think "Oh, my favorite Grady Doc works there!" :)

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  20. As a former AIDS Researcher and later Counselor, I continue to be disgusted by the ignorance of others. CLEARY this boy's race is at the heart of the issue, HIV is just their convenient excuse.

    And congrats Dr. Manning, on your spot on Anderson Cooper!

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  21. "And the belief that he will run all over this campus spewing forth blood and semen everywhere he goes is, I think, somehow shaped by somebody's perception of people--especially male people--who look like him."
    Preach! So well said and so needed. Even here at Grady I catch folks making so many assumptions and presumptions around HIV/AIDS... especially when those patients some consider "high risk" are involved. Folks often don't want to talk about the raciest, sexist, and classist assumptions that underlie these assumptions either. So please, keep unpacking all you can because the world (and especially the ones who would turn intelligent, strong, beautiful black men and boys into hypersexualized risk factors) needs to be reminded of this truth.

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  22. Thanx for bringing this to our attention. I have several doctor friends who graduated from Hershey. This is soo embarrassing. Definitely have brought it to their attention. Maybe the alumni can have a more educated voice!!

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  23. "Tell me something good...tell me that you love me" Where has all the compassion in this world gone? When Magic Johnson first annouced he tested positive for HIV the entire world responded with empathy and a few short months later his fellow NBA players questioned whether he should be allowed to play in the leaugue. Immediately after the AIDS Awareness supporters pushed back against mis-information concerning AIDS the world community sought to protect the rights of AIDS/HIV carriers but now a few short decades later a child has to fight against ignorance to achieve an education at a prestigious institution. "Where is the Love?"
    Nice

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  24. This is a very sad story and its unbelievable that people still don't have a grasp on HIV and infection risks.

    It's also unfortunate that you had to include race in the issue. Let's focus on what's really upsetting here. I don't think the school would have taken a stance that is any different than the current one, even if the student was the "pretty doe-eyed porcelain doll" you describe (interesting description by the way). There certainly isn't any evidence of this in the school's past (just 46% of the school's population is caucasian with 30% african american and 11% hispanic). I would think that we can accept what the school does well while highlighting where they are really making unfortunate mistakes.

    There are white, black and even porcelain children in need of the opportunity to receive an education like this school has been providing. There are also children with HIV that need this opportunity, and it is here that this school needs to be critiqued.

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"Tell me something good. . . tell me that you like it, yeah." ~ Chaka Khan

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