Monday, December 1, 2014

Mina's Law: the #NotYourInfection Campaign


Greetings friends,

As today is the annual observation of World AIDS Day, it is the date we are launching an important campaign. Though this post is long, please take the time to read more about it below! Thank you.

The inspiration behind today's post is an amazing 12 year old girl we call Mina.  Mina is a sweet, kind, and awesome kid who brings joy to her family, friends, and all who know her. She is thoughtful, deeply compassionate, and full of life. She has survived many hardships, so she is mature beyond her years...yet in many ways she's very much still a young girl.





Although Mina adores Korean food, since she was originally born in Africa, she will devour a plate of sweet plantains so fast it would make your head spin! And speaking of spinning, she is as likely to spontaneously cartwheel across a room as she is to sit down and initiate a philosophical discussion with her parents or teachers. She loves K-pop, science, chocolate, dancing, peace signs, silly Vine videos, and hanging out with her friends. A born leader, she has earned herself the unofficial occasional nickname of "Bossy Big Sis."

Overall, Mina is just an all-around great kid. She works hard in school and helps a lot around her home. She's not much different than most tween girls you'd meet with one small exception.

Mina is HIV positive.

(Though Mina's family usually chooses to identify as an HIV affected family rather than disclosing the serostatus of specific family members, Mina felt that it was important in this case to share more information than what is typically within her comfort level.)

Mina adheres strictly to an effective medication regimen of highly active anti-retroviral treatment (HAART) to keep her healthy. By taking a pill once per day, she keeps the virus at bay. For several years, the level of HIV in her blood has measured so low that it cannot be detected in her quarterly lab screenings (her HIV level is "undetectable"), and her immune system has also improved. Though she experiences some health complications as a result of a lifetime of HIV, including a previous AIDS diagnosis, she is in good virologic health.







Her situation is not atypical; a great deal has changed since most of us became aware of the condition that we now call the human immunodeficiency virus, or HIV, over three decades ago. And much of that change is good. We are no longer living in a time where fear and hysteria surrounding HIV are commonplace. The '80's, thank goodness, are far behind us.

Today, we have a clear understanding of how HIV is and is NOT transmitted. Scientists have discovered intricate details about the way the retrovirus operates. Perinatal HIV transmission has been drastically reduced. Research findings and technological advances in HIV diagnostics, treatment and prevention have radically transformed HIV from a "death sentence" to a manageable chronic illness such as diabetes or other conditions.

People living with HIV (PLHIV) now have a life expectancy and quality similar to that of individuals without HIV; with the potential for lengthy and fulfilling lives that include careers, spouses, children, and/or other aspirations. Moreover, we are closer to a cure or functional cure than ever before. But with or without a cure, a growing number of PLHIV are living their lives fully and out loud right here, right now. It is estimated that over thirty-five million people around the globe are HIV+, and many of those people are committed to eradicating the stigma that is unfortunately still attached to HIV today.

I too am tired of stigma. Really freaking tired. So it is my hope to do my part in trying to eradicate stigma by launching Mina's Law: the #NotYourInfection Campaign on World AIDS Day 2014, inspired by this precious young lady living her life courageously and fully with HIV.  I will explain the rationale for the campaign throughout the remainder of this post.

I have grown increasingly disturbed over the years how frequently and callously the word "infected" is thrown around with regard to HIV. Whether it's legal documents in all fifty states and US territories, textbooks, research protocols, media references, literature, conversation, or something else, you can hardly go a day without being slapped in the face with the word "infected."

"I will never forget when I found out that I was infected..."
"The number of HIV infections has risen..."
"This is a support group for behaviorally or perinatally infected teens..."
"We need to increase funding to expand our prevention efforts to curb the number of infections..."

It goes on and on. It has been bothering me for years, to the point where I have had to train myself not to visibly flinch or cringe. Yes, I know HIV is technically contracted via a person becoming "infected" with the virus.  I'm not in denial that it is a virus or that there is an infection that occurs. I get it. It's an infection. But you know what? So is the measles. So is strep throat. So is meningitis. So is the flu. So is malaria, hepatitis, RSV, cellulitis, H. pylori, staph (MRSA), shingles, appendicitis, and a host of other things. They are also "infections," yet they are described quite differently. They are described in a far more respectful manner.

Society pays lip service to HIV acceptance, stating (truthfully) that there is no fundamental difference between being HIV positive and HIV negative. That there is no shame in the diagnosis and no reason to be perceived as less than anyone else who does not have HIV. We participate in AIDS walks, attend HIV related events in our communities, attend national HIV conferences. We publicly condemn HIV stigma.

However, the way we speak about and write about HIV and those living with HIV conveys a much different message than the one of acceptance society claims to hold. The way something is referred to is a huge indication of how it is truly viewed. The presence of "infected" in sentence after sentence, every single day in millions of interactions and important documents strongly negates the politically correct message that "it doesn't matter" whether or not you have HIV.  It asserts that despite the gilded veneer of acceptance, it actually DOES matter. You're not merely HIV positive; you're HIV INFECTED.

Just think about it for a moment. Would YOU want to be referred to as "infected?" That term doesn't exactly conjure up pleasant images in my mind when I hear it. It makes me think of illness. It makes me think of something bad, something undesirable, like a wound oozing with pus. It certainly doesn't cause me to picture Mina's joyful, radiant smile.






I reject that. And so does Mina and the rest of the HIV community. It is best expressed in this quote shared this summer by an adult living with HIV:

"I may be HIV positive, but I am NOT your d@#n infection. And neither is anyone else living with HIV!"


It is 2014. A new day, a new era. It's time to change the way we refer to PLHIV and to change the way we refer to HIV itself.

I am calling on everyone who reads this to please consider helping me. There is no valid reason that I can see that in the United States of America our legal statutes, court documents, and other  areas are still using language that is not inclusive on the federal and state levels. Why can't we say "contracted HIV" instead of "infected with HIV?" Why can't we say "rates of HIV diagnoses" instead "rates of HIV infections?" Why can't we say "HIV positive individuals" or "people with HIV" instead of "HIV infected individuals?"

We CAN.

I'm not alone in this sentiment nor did I conceive of this idea alone. There are so many groups that I admire and respect who are also deeply concerned about this stigmatizing language. A number of groups, including the Positive Women's Network-USA, the Global Community Advisory Board of the AIDS Clinical Trials Group, and others, have provided great leadership and advocacy on this topic. The revered "Denver Principles" are obviously influential as well. This campaign has arisen out of a need that many PLHIV and allies have identified, not just me.

And this campaign needs more than just my emotions; it needs YOU!  I implore any and all individuals and organizations out there to help make this campaign work. It will take a lot more manpower, activism, legal expertise, and media than an ordinary individual like me has to make these changes. I CANNOT do this alone; I need YOUR help.

On World AIDS Day 2014, and beyond, I'm asking you to consider doing the following things:


1. SIGN/SHARE!


We would LOVE for you to sign and widely share this Change.org petition

(Every time it is signed a copy of the petition and comments is emailed directly to the members of Congress, the President of the United States, the Office of National AIDS Policy, and the Senate Committee on Health, Education, Labor, and Pensions.)



2. STOP! 

If stigmatizing language is part of your vocabulary, put an end to it now. Change how you refer to people living with HIV and to HIV as a whole. The Stigma Project has some helpful resources about how to change your "HIV Talk;" check them out here.



3.SELFIE!

If you are comfortable, take a selfie to help end stigma! Snap a pic of yourself holding a sign with the hashtag #NotYourInfection and to blast it all over social media to help get the word out! It doesn't matter if you are HIV negative or HIV positive; you can still help us to raise awareness!







4. SOCIAL!

Utilize the power of social media! Use the #NotYourInfection hashtage widely. Blog/Tweet/whatever about this topic! Consider "liking" our #NotYourInfection FB page and searching for posts with the #NotYourInfection hashtag on social media to keep abreast of updates.



5. SUPPORT!

Another important thing that you can do is to support this cause! Commit to legislative, media, and community action and outreach surrounding this issue in your area. Contact your state's Congress and Senate representatives. Urge them to consider authoring a bill to make Mina's Law a reality. Do the same thing at the state and local levels too for maximum impact. Attending the annual AIDS Watch event is a GREAT opportunity to engage in legislative outreach, but there are other ways too!

It is my hope that as this campaign grows that the many dedicated organizations within the global HIV activism community will take this campaign to new heights with their leadership, sharing existing resources and creating additional ones (such as toolkits containing sample letters and other useful advocacy tools) that supporters can use to advocate for this cause. I look to you all to help and wisdom!

Thank you all for your support and help showing the world that PLHIV are #NotYourInfection!!!






Monday, November 3, 2014

Proud Mama: My Little Advocate


I hope you all don't mind me sharing something from a very unconventional little advocate...my youngest daughter.

My daughter is six years old. She is a sweet, fun-loving little girl who loves to read, loves to sing, and loves to play. She has an IQ in the moderately gifted range. She is also a little girl of color and proudly Autistic.

As she has been reading books independently since before she was two years old (she, like many Autistics, was hyperlexic), she took it upon herself a few months ago to dismiss me from my bedroom story duties.  Now she and her little brother, who is four years old, take nightly turns choosing a book. Then the two of them lay down and she reads aloud (since he can't read).

She was very concerned about the book that they read last night. So today she decided that wanted me to send them a letter that she wrote to tell them about her concerns. She emailed the following message to me for me to print out and send on her behalf:

"Can you put little dog in the back so the dogs can be safe? I am six years old. It made me feel confused when little dog sat in the front of the car. If kids read Being Safe they will think that they should sit in the front of the car too. It's that they won't be safe."

She was concerned about a section of the book that depicted a dog buckled in the front passenger seat beside his mother (the "animals" were dressed like humans and were acting like humans as well) while she drove them around in their car.  She wanted them to consider changing that to prevent possible safety problems.


It has been a rough week. Very rough. But every day I see so many reasons why it is important to continue advocating, continue educating, continue caring about the world around me. I am humbled, and inspired, on a daily basis by so many wonderful people who give of themselves in an effort to make things better for all of us.

Sometimes my daily inspiration comes from any number of the selfless, dedicated, extraordinary people who are doing amazing things around the world.

But sometimes it comes from the simple act of a familiar person in the next room, like my baby girl.  She's just a small child, but she's pretty amazing to me actually. So very proud.

Monday, October 13, 2014

Join Our Virtual Event to End Violence Against Women (including TW) Living with HIV!

We need YOUR help; participate in a FREE, worldwide virtual event for the Day of Action to End Violence Against Women Living With HIV! #EndVAWHIV #SaveWomensLives

In part because of successful advocacy efforts of Texas female leaders, including Advocacy Without Borders, to address the brutal 2012 and 2014 murders of Elisha Henson and Cicely Bolden, Positive Women's Network-USA is spearheading this national inaugural day to coincide with National Domestic Violence Awareness Month. An astonishing 3 out of every 4 women living with HIV have experienced violence during their lifetime. The devastating combination of violence and HIV results in higher rates of mental health diagnoses such as depression, PTSD, and anxiety as well as greater likelihood of virologic failure and/or death. HIV+ transwomen report even higher rates of violence. These destructive trends cannot continue!

Throughout the US there will be local and virtual events of all types to commemorate the Day of Action during the week of October 23, 2014. Advocates in Houston, Texas are coordinating a virtual event to raise awareness as well as pay tribute to positive women and girls, including our transgender sisters, whom have experienced violence.  Here's how you can help!


*****Participate in our flash blog!

We will be hosting an online "flash blog" and would love for you to join in! A flash blog is a collection of individual writings, images, art, poetry, etc about a particular topic written by different people that are all shared in one place [usually a dedicated blog address] on the same day.

We are seeking posts about violence and women living with, affected by and at risk for HIV, including our trans sisters.  You can share just a name and a date; you can share a detailed story; you can share a poem, song, pictures...whatever you'd like.  Feel free to use a pseudonym or initials if you don't want your identity or the identity of the person you are referencing to be known, or state that you'd like your post to be anonymous. We will share all the posts that we receive at various intervals throughout the Day of Action (October 23, 2014) at http://EndVAWHIV.blogspot.com

Please send us your flash blog contribution and/or contact us for more details at SaveWomensLivesFlashBlog@gmail.com)


In addition to the flash blog, here are some other virtual ways that you can get involved!

1) Signal boost the Day of Action! Share the memes, post about the day in your statuses, inform people at meetings and on conference calls and in groups, etc.  (Be certain to use hashtags related to the day such as #EndVAWHIV, and more general domestic violence hashtags such as #SaveWomensLives.  A comprehensive social media toolkit from PWN-USA is available here containing sample tweets, statistics, suggested activities for engaging people on social media, etc.)

2) Change your social media profile pic to honor the Day of Action, & encourage others to do so!


     Consider using this image:


    Or perhaps this one:

3) Distribute the PWN-USA fact sheet to educate people about violence and HIV.  It can be sent via your email list-serves, tweeted, etc. It is available here.


4) Engage in advocacy surrounding Elisha Henson's murder to demonstrate solidarity and support. Details about some ways that this can be done can be found here.

5) "Join" the Day of Action Facebook online event if you have not done so already, and also share the event widely! It is available here.

Friday, October 10, 2014

Join our effort to assert that disabled lives matter

An identical version is cross-posted here:

Join Parenting Autistic Children with Love and AcceptanceAutism Women's NetworkAdvocacy Without Borders, and Boycott Autism Speaks for a flash blog!!!

October 11, 2014 - October 25, 2014: #IAmNotKelliStapleton #WalkInIssysShoes 


A great disservice was done to all Autistics and their loved ones when attempted murderer K. Stapleton appeared on the Dr. Phil show.  Rather than take responsibility for trying to kill her disabled daughter, the entire conversation centered on blaming the victim - teenage Issy Stapleton - for provoking her mother's abuse because of her "out of control" autistic behaviors. Dr. Phil gave K. Stapleton and others who devalue disabled lives a huge platform to excuse abuse and murder under the guise of "mental illness" or because of "inadequate services." 


Given that over 40 disabled individuals in the last five years have been killed at the hands of their caretakers, we must act. Too many lives are at stake. There is NEVER a justifiable reason for murder and abuse.  Along with Autism Speaks, K. Stapleton's opportunistic story has led the public to believe that she is representative of autistic families and that such choices are acceptable. We need to change that conversation. 


Help us speak out!  Autistic advocates and are allies need your help! Advocacy Without BordersAutism Women's NetworkParenting Autistic Children With Love and Acceptance, and Boycott Boycott Autism Speaks are collaborating to host an #IAmNotKelliStapleton‬ #WalkInIssysShoes flash blog from October 11, 2014 through October 25, 2014! 14 days...one day for every year of Issy's life at the time of the attack.


WE NEED YOUR CONTRIBUTIONS!!!!  Please send in  a statement about how you are NOT like K. Stapleton and why it is dangerous to believe that way, about how Issy is the REAL victim, about your own experiences, etc.

If you're a parent, you might prefer to use the #IAmNotKelliStapleton hashtag; if you are a non-parent, you might want to use #WalkInIssysShoes. We will be inclusive of BOTH as we want EVERYONE, parent or non parent, Autistic or allistic, to be able to participate.

You can create a statement, a letter, a YouTube clip, poem, video, etc; we are open to various different types of media. If you already have a blog, tumblr, etc and want to cross post there as well as here, we will reblog as well as provide the link.  Send your contribution to us as soon as possible at EducateSesame@gmail.com or to AdvocacyWithoutBorders@gmail.com

Be sure to keep up with the following hashtags on social media for details as well:
#IAmNotKelliStapleton
#WalkInIssysShoes




Monday, October 6, 2014

Are you gonna go my way?

Like most activists, I do what I do because I love it. It's a core part of who I am. It isn't for accolades, it isn't for attention, it isn't for financial or personal gain, it isn't for fame. Although it is rewarding, it is also very much a sacrifice; often demanding time, effort, money, and emotional/cognitive/physical energy - all things that for many of us are in short supply.  And a great deal of the time, we will hear many more "No" answers than "Yes." Yet we do - and will - keep going.

We will encounter more opposition than we will support; will face more rejection than inclusion; will plant seeds that we know we will never reap in hopes others after us will benefit from our work; will expend money, time, and "spoons" knowing that even more will be required and that we will have to replenish them on our own while still finding a way to give.

And yet we don't stop, and won't. This is who we are. This is who I am.

I don't need pay. I don't need a pat on the back. I don't need to be well-known. I don't need kudos, media coverage, or recognition. I don't need thanks. I don't need friendships. I'm not opposed to nor will I refuse any of these things should they happen to be given to me along my journey - indeed I have made some strong friendships that I treasure through the years and have found that attention can assist the cause. And as someone who's far from wealthy, money helps advance what one is able to do as well, as it provides a mechanism to reach more people and to help others. I don't see any of those things as "bad" things. They're just not a need. I can, have, and will continue without any of them - without being given a dime for my travel or my contribution, without being featured in any story or show, without a "following" of any type. Like most of us, while those can be helpful "extras" if available, that isn't what I'm here for, and I don't "need" any of that.

But what I do need is this.

Don't effin' sabotage me and mine. By "mine" I mean my brothers and sisters in the struggle. Don't set us up. Don't appear to be an ally and then stab us in the back. Don't make promises and then renege on them. Don't play "devil's advocate." Don't play games with what we're doing - we're fighting for our, and other people's lives here. Don't hurt us and don't play us. If you're not going to be "for" us, I can understand. Just please don't stand in the way.

I'm going to be all right. My family is too. I am an advocate through and through and that will never cease, but my initial responsibility is to my family. They are my top priority - first, last, and always. I will always seek to make certain that no matter the social, political, or economic climate and/or no matter my struggles and shortcomings, I will provide for their needs in order to ensure to the best of my abilities that they have happy, healthy, fulfilling lives.

But it's not about me and my family. I don't do any of this out of need. I do it because there's a world of people out there like me. There's a world of people out there like my daughters. There's a world of people out there like my sons. And like one of my idols, Dr. Martin Luther King Jr. once said, "Until all of us are free, none of us are free."

It's not good enough that MY family has access to HAART and PrEP. It's not good enough that MY family receives an inclusive education.  It's not good enough that MY family lives stigma free, that we are a proud HIV affected, Autistic, adoptive, neurodiverse multicultural family, that we do not hide from nor feel limited in any way by who we've been made by God to be.  These victories weren't given to us; we fought for them. But the fighting doesn't end just because we've had some successes in my little circle of the world.

As long as even one person is unable to have similar access, similar acceptance, similar resources, similar options, how can I be content? How can I rest? I can't.

But when I have to contend with soul-crushers and those who sabotage those of us who've put ourselves out there by choice as advocates, it takes away from my ability to effectively "do" for others. It robs me of valuable time and energy that could have been better utilized in others ways to help others. It drains me and makes me less capable. It makes me less willing. It makes me tired and makes me less focused and less able to summon what I need to give my all to fight for others who need me.

And believe me, people need me. Not because I'm anything special - I'm just Morénike. I'm ordinary.  But ALL hands on deck are needed. The Bible states, "The work is plenty, but the workers are few." Every last one of us that is helping in our own individual and collective ways is needed out here. We cannot afford to lose ANY one of us.

We need the self-advocates, we need family advocates, we need allies, we need caring professionals, we need concerned family and community members, we need researchers, we need providers, we need bloggers, we need educators, we need allies in the media, we need activists, we need social media warriors, we need lawmakers and politicians, we need policy experts and decision makers, we need benefactors, we need philanthropists, we need visionaries. We need you. We need me. We need everyone.

There's a lot at stake and a lot that we already need to overcome. We should not have to worry about being taken out by our own. Please don't hurt us. Don't work against us. Don't sabotage us.

Work with us. Stand with us. Amplify our voices and add your own. Fight for us.  Fight with us. Please.

And if you won't?

Then please, for the love of God, don't fight against us. If you aren't going to actively help us, we will survive. Not everyone can help. That doesn't make us enemies. You don't have to help us. But please just step aside. Be real with yourself, and with us - if you're not on our side, step aside.  We can handle it if you're not here to help. But we don't need you to hurt, sabotage, and sideline us.

You don't have to be our enemy if you don't help us. But you DO become our enemy when you choose to hurt us.

You can't have it both ways. Choose you this day what it will be.

I need to know.


(Photo credit: clubtone dot net)

Friday, September 12, 2014

Help #SaveWomensLives and demand #JusticeForElisha

Help ‪#‎SaveWomensLives‬; HIV+ women who've been recently abused DIE at a 42% higher rate than others! The first ever National Day of Action to End Violence Against Women with HIV will occur on October 23rd, 2014.  This day was inspired in part by advocacy efforts surrounded the murders of Elisha Henson and Cicely Bolden.

Whether HIV+ or HIV- we need your support! You can participate virtually, or join/host an in person event of your choosing. Also, please spread the word! ‪#‎WLHIV‬ ‪#‎JusticeForElisha‬ ‪#‎pwnspeaks‬

Feel free to share the event if you like! Additionally, Venita Ray and I will be hosting a #SaveWomensLives flash blog for anyone who wants to participate virtually and possibly an in-person event if others in the Houston areas are interested. We don't have all of the details yet, but will share when we do. Feel free to message us with questions about the flash blog until then, or hit us up via email if you'd like at: SaveWomensLivesFlashBlog@gmail.com

https://m.facebook.com/events/308185389368589?acontext=%7B%22ref%22%3A3%7D&aref=3&ref=bookmark

Thursday, September 11, 2014

My response to Phil Roberson's remarks about HIV

"Dear Phil Robertson of Duck Dynasty,

You say that people living with HIV are being "punished by God" for "immoral behavior."

Is that right?

You're not that creative, sir. We've heard all of this before, and worse.

In fact, I remember the first time my family experienced HIV discrimination years ago. From someone whom I trusted and didn't expect would "freak out" over it.  I can still hear the indignation in the person's voice, can still recall their awful, hurtful words. I remember saying silent thanks that my daughter didn't know enough English to comprehend the verbal sewage being shouted as she stood next to me, although I could tell that she was alarmed by the heated exchange. I also remember mentally bracing myself in case I might need to duck, as I was fearful that the ugly exchange might turn violent.  (Fortunately, it didn't.)

That was the first time. But it wasn't the last.  Most weren't as bad as that one, but they all hurt. Like being ostracized by people who'd literally been in my life since I was a toddler. Or being asked for my children and I to leave a birthday party. Or the dentist who refused to treat our family because of "transmission fears." Or the private bus service that wouldn't transport the 20 families I'd arranged to be transported to an event (for the play date group for HIV affected families that I used to run) because they didn't want "AIDS on their bus," cancelling mere hours before they were supposed to arrive - on a weekend no less. Or the times your children tearfully tell you that yet another classmate's parents have barred them from coming to your house to play - and you know exactly why that is.

You get used to it. But it still sucks.

For every bad story, there are many good ones too. Like the people who look you in the eye and tell you they don't care and love your family anyway. Like the co-workers, friends, family, and teachers who shower you with love and support. Like the church members who take up a donation for your AIDS Walk team every year. Like the virtual "family" you get a chance to connect to on social media who champion your cause even if it doesn't personally affect them in any way.  Lots of people realize that HIV isn't a "punishment."  Not from God, or from anyone or anything else.  It's a chronic condition.  No more, no less.

This is 2014, Mr. Robertson. And I don't know about YOU, but the God I serve doesn't hate people living with HIV.  In fact, He doesn't hate - period.

You could learn a lot from Him.

Now excuse me while I go online to complain about your hate speech to your boss, A & E.  After that, I need to go help my "immoral" children with their homework, cook dinner for my "immoral" husband, and then go wash my "immoral" hair.

Good day."

(Friends, if you'd like to join me in speaking out about these discriminatory remarks, please visit the link below for the contact info for A & E:)

https://secure2.convio.net/nmac/site/Advocacy;jsessionid=9C368DED458E2C113DA300ACC44E72E2.app263b?alertId=172&pg=makeACall&autologin=true&AddInterest=1070




Tuesday, September 2, 2014

Update: Help demand #JusticeForElisha and an end to violence against #WLHIV

For many, this is a joyous week.  Labor Day just passed (yesterday) and the long weekend provided much-needed rest for those who were fortunate enough to have the day off.  Also, for a lot of families, today was the first day of school - an exciting time for a fresh new year of learning.  Additionally, it is now September, so several people are looking forward to the crisp winds and colorful leaves that usher in autumn.  For my family, September is a month of birthdays; my daughter this weekend; my son next week; and my two brothers the week after that.

However, September 2014 is anything but joyous for the grieving family of Elisha Henson.  The beautiful young HIV+ Texas mother, who would have turned 31 years old this Friday, was brutally murdered this spring because of her HIV status.  Instead of celebrating with their mother this weekend, her young sons and her family are mourning her loss.  Elisha was killed because of irrational fears and stigma surrounding HIV; the man who murdered her had virtually NO chance of contracting HIV from her and had NO right to end her life.

Today, her killer and his accomplice have been indicted for Elisha's murder in Angelina County.  As things progress in this case, I am calling upon you pleading for your help.  Please do not let Elisha's death be in vain.  I implore you to stand with us.  We demand #JusticeForElisha.  The family deserves answers and they deserve to see that justice is served.  With our voices, we can let them know that we care.  There are some advocacy tools that have been created to help anyone who is willing to take a few moments to help; they are available here on this post on the Positive Women's Network-USA (PWN-USA) website and I'll also link them at the end of this.  Inside the link are several ways to help advocate; the most pressing one right now would be for you to download the Letters to the District Attorney, modify them as needed, and please send.

Why do we need to send letters to the DA when we don't live in that county, you ask?  Because we NEED to show that there are MANY people around the nation watching to make sure this case is handled fairly.  We need to stand in solidarity with Elisha's family in her memory and in the memory of the many positive women living with HIV who have experienced intimate partner violence (more than 50%) in the US alone.  Such stats are unacceptable; even one woman is one too many.  If we are silent, we are indirectly condoning the continuance of violence.

If we speak out, we can help make sure that there is appropriate attention paid to the facts of this case in hopes of making sure that due process occurs.  In the real world, we have all seen that there are many times in which "sympathy" comes into play, increasing the likelihood that charges are reduced and/or "slap on the wrist" plea-bargains are offered.  This happened just yesterday in the case of Kelli Stapleton (a Michigan mother who tried to kill her autistic daughter Issy), whose "attempted murder" charges were reduced to "first degree child abuse."  All over the media, articles, op-eds, and blogs reiterated that it was "understandable" how she was "driven" to such a violent act out of "desperation," and portrayed teenage daughter Issy as a violent, out of control monster whose "loving" mother had endured more than she could take. It's not too much of a stretch of the imagination to assume that there could be people who sympathize with Elisha's killer as well for his unfounded fears of "catching" HIV even though it was virtually impossible.

There is another important way that you can help also, in addition to sending letters.  PWN-USA will host the first ever National Day of Action to End Violence Against Women with HIV, which has been inspired in part by Elisha's unnecessary murder and that of Cicely Bolden, another young HIV+ Texas mother who was similarly murdered two years before.  The day of action will occur on October 23, 2014, coinciding with National Domestic Violence Awareness Month.  PWN-USA is hosting a planning call for the Day of Action this Thursday on the day before what would have been Elisha's 31st birthday.  You can join the call to find out how to lead an event in your area.

Finally, the July PWN-USA link also provides other ways you can show support, such as sending supportive online messages to Elisha's family and/or kind letters to the family, and a sample letter for reporters whom have been respectful in covering this case, such as Jessica Cooley (jcooley@lufkindailynews.com), a local reporter whom has written several articles about Elisha's murder since the spring.

Thank you for your support.  Together, we can help stop the cycle of violence and can work to obtain #JusticeForElisha.

Click here for the July 2014 post containing information and advocacy tools related to the murder
Click here for PWN-USA's Sept 2014 post on the Day of Action



Sunday, August 31, 2014

HIV Adoption + HIV Criminalization

According to the US Office of Adolescent Health, ~47% of all teens have had sex. Of that group, half have also engaged in oral sex and a tenth in anal sex. 40% of sexually active teens do not report regular use of condoms, 15% of those have had 4 or more partners, and over a quarter of all teens, sexually active or not engage in "sexting" or other forms of virtual sexual activity.  For gay and bisexual teens, these numbers are even higher.

No one likes to talk about it, but kids are "doing it." Are they emotionally ready for all of that? Most likely they aren't. But it's happening. Whether we face it, deny it, or ignore it, it's happening.

For those of us with HIV affected families, there is an added layer of complexity to the already confusing waters of sexuality. Dealing with the potential reactions of a partner can be stressful and fear-inducing; maybe even more so than navigating when, where, why, how, what, and to whom you disclose.

The number of HIV+ children in the US is shrinking as more and more positive women are giving birth to babies without HIV.  But in recent years a growing number of families have welcomed children living with HIV (usually from other countries) into their homes.  Most of these families are committed to dispelling stigma and myths surrounding HIV adoption, emphasizing that HIV is now a manageable chronic illness and that these children deserve the right to grow up and thrive like any other adoptee.  Their families are living examples that HIV is nothing to fear and helps to promote HIV acceptance for all PLHIV, adults and children.  Many have influenced others with their stories, prompting more families to consider, and in several cases, complete an adoption of a positive child.

It is to the HIV adoption community that I am addressing this post.

You have made great strides through the years.  Thanks to you, people are becoming more and more aware of the need for and the possibilities of an HIV adoption. You are raising healthy, happy kids with access to life-saving medication in addition to the support of a loving family and the abundant resources available within the US.  You guys rock!

However, your work is incomplete.  Unfinished. Undone.

You have brought one or more HIV+ children to this country.  You might have encouraged others to do the same. But what kind of a world, what kind of a system awaits them when they grow up and are ready to become adults?  One that is very different than what they are experiencing now, under the relatively safe bubble of childhood.

32 out of the 50 states in this country have HIV-specific criminalization laws, and all 50 can utilize general laws and statutes to criminalize HIV regardless of the presence or absence of a criminalization law. In many states, the saliva, genitals, and genital fluids of PLHIV are legally considered to be "deadly weapons."  These laws are antiquated and do not match up with a scientific understanding of HIV transmission risk.  But however ridiculous the laws might seem, they are legitimate laws - and they apply to your child.

Children grow up. They do not stay five, or ten, or twelve. They become 14 years old, 18 years old, 25 years old. In the course of that growing up, things happen. One of which may the desire to engage in sexual activity.  Which is an emotional and uncertain time for anyone, but especially for young people living with HIV.  Most likely they are well-informed about how HIV transmission and know all the facts, but being knowledgeable doesn't make having the conversation any less potentially awkward.

According to CDC statistics, there's a high probability that some of them may become sexually active before the age of twenty. In spite of their parents' morals. In spite of what they've learned in health class. In spite of purity pledges, promise rings, chastity pacts.  Some kids will wait. But some will not. And that's where the problem lies.

In a decade or more a spiteful ex with a grudge could decide to press charges on your child, claiming lack of disclosure even if they did know. As could that person they had a drunken hook-up with at a party due to a temporary lapse of judgment - even if your child has an undetectable viral load and a condom was used.  Or some other possibility.

People spend much more of their lives as adults than they do as children.  As parents, we have a responsibility to do what we can to bring about radical change to improve the world that our children will inhabit.  It's not good enough just to bring them here - not if they and/or other people who are like them are going to be subject to biased, unjust laws that single them out for their HIV status. We need to do more.  For them, and for everyone else too.

I googled HIV adoption. I read link after link about the need to quell stigma and raise awareness about HIV.  All very important.  I read blog after blog encouraging others to consider HIV adoption also. Definitely important.  I read links advocating for ethical adoption and links about supporting orphans and child welfare programs. Also important.  I read opinions about public HIV disclosure versus more selective HIV disclosure. Still important.

If even half of the people who've written blog posts about why they chose HIV adoption would take the time to write to their state legislators, local prosecutors, and local media about HIV criminalization, what an impact it could make! There are hundreds of HIV adoptive families across the country living in various states. That might not sound like a lot, but it is. One recent article by a mom about HIV adoption has nearly 40,000 shares in its first week!  HIV adoptive families have a platform and a voice. It's time to join hands with HIV advocates who have been fighting this battle and lend support and assistance.  HIV criminalization fuels stigma, violates human rights and dignity, and does nothing to reduce the overall incidence of HIV.  It rips apart families, destroys lives, promotes shame and discrimination, and is poor public health practice. We can do better as a society. We can do better as a community.

We can do better.

Speak up and tell the world that HIV is NOT a crime!!!

This link is a hub for a plethora of resources to help you get started understanding and advocating for HIV Decriminalization. Check it out below!
http://www.poz.com/criminalization.shtml

Photo credit: marksking.com

Monday, July 28, 2014

Everyday advocates: a layperson's response to HIV stigma


HIV stigma can be found almost anywhere.  Bob Frey is currently an aspiring candidate for the position of Minnesota House of Representatives; read what he said earlier this month and HIV and also about the LGBTQ community: 

??? HIV 101 according to aspiring Minnesota House of Representatives' Bob Frey: "When you have egg and sperm that meet in conception, there’s an enzyme in the front that burns through the egg. The enzyme burns through so the DNA can enter the egg. If the sperm is deposited anally, it's the enzyme that causes the immune system to fail. That’s why the term is AIDS – acquired immunodeficiency syndrome....It’s about sodomy. It’s huge amounts of money. AIDS is a long term illness, causing pain, suffering, death, a long-term illness that’s very expensive to treat.” 

Below is a copy of an email sent in response to Mr. Frey's HIV stigma and homophobia: 

"Mr. Frey, your comments about HIV are both inaccurate and hurtful.  As someone who is running for office, it is your duty to be informed about important issues.  I don't expect you, or anyone, to be an expert on all things; I certainly am not.  But I DO expect you to employ your team of volunteers/interns/staff/friends/Google or whatever to make sure that you are fact-checking.  You are spreading misinformation and perpetuating HIV stigma, which destroys lives.  Regardless of your views, you should treat others with respect. 

Speaking of respect, you displayed blatant disregard for the LGBTQ* community with your words as well.  Again, a little fact-checking goes a long way...as does common human decency toward others.  I am a heterosexual woman, but I was born in Minneapolis; if you think that Minnesotans will support a governor who attacks its queer citizens, then you are sadly mistaken. 

I invite you to take a look at some educational resources that I am linking to at the bottom of this message in hopes that you will take the necessary steps to become more informed and not perpetuate ignorance, stigma, misinformation, hate, and fear.  I also hope that you will be mature enough to issue a public apology and recant your words. 

As the mother in an HIV affected family, I don't need people like you filling my children's heads up with harmful lies about who we are.  Neither do the millions of people LIVING and THRIVING with HIV all over the world, including your state.  There is NOTHING shameful, awful, sinful, or bad about being HIV+; it's a serostatus.  We are still people.  I admonish you, sir, to choose your words more carefully next time and to consider the feelings of others." 

Morenike Onaiwu 


Want to contact Mr. Frey and help him to understand that words hurt? I hope you do (please be assertive, but not rude; let's not stoop to his level)!  

His website is http://www.bobfreymn.com/ (you can leave your name, email, subject, and a lengthy message under the "Get Involved" tab.)

Love and solidarity to you all.



Thursday, July 10, 2014

Advocacy efforts for an undeserved death

(Many thanks to Positive Women's Network-USA for featuring this blog post on their website; it can be viewed here.)


Greetings everyone,



Perhaps you are aware of the tragic May 2014 murder of Elisha Henson, a 30 year old Texas mother of two who was brutally strangled and dumped into a lake a few months ago after a male with whom she'd had a previous intimate encounter learned of her HIV status.  It received some media coverage, but there are many whom have not heard about it yet. One account describing the incident can be found here: http://m.ktre.com/#!/newsDetail/25792737

Though the consensual physical act that Elisha and the alleged murderer engaged in was not an act that would have resulted in any risk of HIV transmission, fear and ignorance fueled a violent, unnecessary act. And now two young boys are without their mother.

Elisha's murder, like that of another young mother, Cicely Bolden of Dallas two years ago (who was murdered by a boyfriend after she disclosed her HIV status to him), and countless others before that, highlight the fact that though we have come very far over the years in the field of HIV, we still have a long, long, way to go.

Though we now know as evidenced by several randomized HIV clinical trials and other data that with adequate treatment, the risk of HIV transmission is quite low, very often people's perceptions do not match up to science or to reality.

Quite literally, HIV stigma kills - though not always in this manner; sometimes in the role it plays in people's decisions to drop out of care due to hurt, denial, and anger; sometimes in harmful actions people might engage in as coping mechanisms; sometimes in other ways.

Nationally, advocates are taking action, including the Positive Women's Network-USA.  Several of us Houston advocates have also teamed up to address this situation, which happened nearly in our own backyard (just a few hours away in Angelina County, near Lufkin, TX).  We encourage other Houstonians to support us, but ANYONE  can get involved, no matter where you live.  Several of the efforts we have identified thus far are easy, free, and will take very little of your time.

Four of these are listed below. The first three are letters and the fourth is online.  We have drafted a series of letters that you can sign and send.  There are letters for groups (with permission, you can send on behalf of another group [church, synagogue, nonprofit, etc] with whom you might be affiliated). There are also individual letters.  We are  happy to provide these letters to anyone who would like them; just email a request to JusticeForElisha@gmail.com and we'll send them promptly, or you may print the letters directly here from our links on the PWN-USA's website. All of them are described below:


1) The first is a letter to be sent to Elisha's family via the funeral home in Lufkin, Texas that handled her funeral. It expresses condolences for their loss.

2) Another is a letter to the District Attorney of Angelina County urging for justice to be served.

3) The third is a template to send letters to reporters/media outlets that have covered the story in a positive manner. (We can provide you with contact info if needed for several of these).  It is important to commend and support journalists that report about HIV fairly and respectful without perpetuating sensationalism and HIV stigma.

4) Finally, you can send the family  condolences through Elisha's online obituary. At the bottom of the obituary, there is an option to "sign the guestbook." Signing the guestbook is free, and the responses are compiled and given to Elisha's grieving family at periodic intervals. No registration is required, as one can use a pseudonym if they wish.

To date, there have been very few signatures in the guestbook. It would probably be great consolation to them if several people would consider signing the guestbook and leaving a few kind words of support for her family.  From media accounts, the family was seemingly having a lot of difficulty coming to grips with her diagnosis and now have to also deal with her untimely death.

Most of the comments already posted are very short (a sentence or so); one can leave a comment in a minute or two.  My ONLY caveat, and I ask in advance that you pardon my frankness, is that you exercise decorum when you comment.

Simply put: "If you don't have anything nice to say, don't say anything at all."  The family has already been dragged through the mud as stories of Elisha's struggles with substance use and her HIV diagnosis were made public. I DO NOT wish for anyone to write ANYTHING in the guestbook that would hurt them further.

No condemnation, no finger pointing, no judgment - her elementary aged little boys and grieving family and friends don't need that stress.  Everyone has a past.  Please do not write anything that will cause more pain. Simple condolences go a long way.

(On the obituary webpage, there is also an option at the top of the page to send a card and/or to send flowers.  I have not researched any costs that may be associated with those additional options; you are welcome to check it out if you like.)

Thanks for your patience with this matter, and your anticipated cooperation as well.  Please feel free to contact us with any questions.


Respectfully,


Morénike Giwa Onaiwu, Venita Ray, Dena Hughes


Link to obituary (at the bottom you can click the link to view and/or sign the guestbook):

http://www.carrowayfuneralhome.com/fh/obituaries/obituary.cfm?o_id=2520556&fh_id=12203

Tuesday, June 17, 2014

HIV Criminalization: Let’s DO Something, Houston!

WLIVING WITHOUT LIMITS LIVING LARGE INC.
"A Place where HIV positive heterosexuals can thrive"
& ADVOCACY  WITHOUT  BORDERS
“Encouraging ALL people to make a difference…regardless of their differences”

PRESENT
"HIV Criminalization: Let’s DO Something, Houston!"
Friday, June 20, 2014
6:30 PM – 8:30 PM

Much progress has been made with HIV Criminalization, but there's still MUCH to be done! Please join Living Without Limits Living Large and Advocacy Without Borders THIS FRIDAY NIGHT for:

¨    An interactive evening presentation
¨    Free casual dinner
¨    Lively discussion about what we can do in OUR city

  NEW LOCATION!
The Montrose Center
1st Floor, Room 114
401 Branard St.
  Houston, Texas 77006

RSVP TODAY!!!

Phone: 832-545-5689

Also, visit us online:
 www.livinglarge.co; advocacywithoutborders.blogspot.com

Wednesday, June 11, 2014

Can Ryan White Part D be saved? We believe so!

Exciting update from Dr. Ivy Turnbull of the AIDS Alliance for Women, Infants, Children, Youth, and Families!!! See an excerpt of her communication below:

"GOOD NEWS!!!! While the full text of the Senate LHHS appropriations bill is not yet available, Part C and Part D are funded separately and are not consolidated as proposed in the President's FY 2015 budget request. Also page 15 of the attached tables show an increase in funding.  Once the bill language is released I will be able to provide additional information."

(Tables not yet provided; seeking permission to post them)

Wednesday, June 4, 2014

Young Independent People's 1st Summer Conference!

From July 14- 17, 2014, the Center for Independent Living will be hosting Young Independent People's first ever Summer Conference in Berkeley, CA. This conference is designed for individuals with disabilities between the ages of 15 and 24 who wish to achieve their dreams of independence and to connect with others in pursuit of similar dreams.

The conference will teach advocacy skills, and provide training to increase self-confidence as well as leadership ability.  In addition, youth are shown how to utilize public transportation  as well as partake in a community adventure. Young Independent People is open to youth with any kind of disability.

For more information and to RSVP, which is required, please contact Stacey Milbern at 510.841.4776 or by email at smilbern@cilberkeley.org